My Ovacome

Some news that has rocked my boat a little today.

Hi there sisters. I'm afraid this is going to be a long and boring post but I hope you can get to the end for me please.

I'm usually a half full kinda girl with a good sense of humour but this week has been really difficult. Had the onset of a lot of pain in pelvis and lower back, plus a new lymph swelling under my arm, which I noticed last weekend. The pain subsided briefly when I spent a penny. Last Tuesday the on duty oncologist at chemo suggested it was a bladder infection and the lymph was just reacting to it. I started to drink cranberry juice until I turned dark red and almost caused a tsunami when I peed - every 20 minutes - day and night!! A visit to the local doctor Friday night sort of confirmed this. Sent my pee off for analysis. However, today the pee test confirmed that there was no infection in my bladder at all. At least the manufacturers of cranberry juice can cease production for a while. There's no indication in my blood that I have an infection anywhere.

The pain is caused by the avastin, according to today's on duty oncologist. It attacks weak muscles and as I already have a weak lower back caused by my partial hysterectomy many years ago, and because avastin has an accumulative effect, it's why the pain is in those regions has manifested itself so far along the road. She has given me some antihistamine for a month to help offset the side effects. Then she hit me with the CA125 result which last week's onc ordered for me as he could see I was anxious. It was 132.5.

Here's the rub and the nice lady onc couldn't hide her disappointment from me to be honest.

I had my first and last Taxol (with carbo/avastin) on 22nd August. First and last Taxotere (again with c and a) 3 weeks later and started weekly carbo/avastin on its own 3 weeks after that. My original CA was 385 - quite low for a stage 4B I have noticed by reading some of the posts here. 8 weeks after 22nd August I had a PET and CA125 was down by over half to 152. My onc and I were delighted and all tumours had reduced by half with no new sites.

Today's CA comes after 5 weeks of chemo and is a reduction of just 19.5. I know it's going down but I've only 3 more weeks on chemo so I'm never going to get under 35 (that's the max in the safe zone here in France - don't know if it's the same in UK). When I finish chemo I'll still be well over 100 and not in a good position to go into any sort of remission. My biggest worry is that once the carbo stops the cells will just go into overdrive and all these weeks would have been for nothing. Also, there hasn't been any "lymph reaction to bladder infection". It's a new site as far as I'm concerned. Added to that, my blood count continues to fall so today they reduced the amount of carbo I had. So that’s another 3 weeks of reduced carbo if it doesn’t pick up next week.

I've had a really crapola week. Lots of sad news, pain, diet change to try to lower potassium in blood - which didn't flipping work so I'm ditching it and returning to my iron rich diet - some pond dweller has been sending me nasty emails which I'm saving for the gendarmes in case I take it to litigation - and now this.

Next week my own oncologist is on chemo duty so I can have a quick chat as he has to get around to everyone in a short time before he starts his main job. My next PET is January followed a couple of days later by an appointment to see him properly and see where I'm at then. I don't expect to hear good news. Do you girls think he'll decide not to keep me on avastin? It's starting to get to me a bit and my sons will call tonight and I'm struggling to keep the emotion out of my voice. My Cancer Support Counsellor will be phoning in 15 mins so I can offload a bit to her beforehand. I guess I just need some reassurance from you girls if you've experienced anything like. I would really appreciate it. Failing that, a bloody good joke would certainly hit the spot right now. Sorry I've gone on and on - but as some of you know, it is the norm for me!!

Love and big hugs to all of you.

Kryssy xxxxxxxxxxxxxxxxxx

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Oh Kryssy.. I’m sending you a really giant hug...wot a rubbish week! I don’t have the experience to comment on your treatment...although what you say about Avastin and muscle weakness rang bells with me.

It does sound a bit like you are at a crossroad...maybe a good time to look about for other opinions or options.

I hope your team can come up with a way forward for you...but they may need time to do this. Lots of love Lyndy xx

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Ah, thank you Lyndy. I'm feeling the hug. Big hugs to you too xxx

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Avastin hit me in the nose and I got blood noses and want sent to ent, then I had a little rectal bleeding but gastro said it was piles and he banded them, yes your muscles get weak, If you can manage to get out for a walk do every day, if not do get up and walk around your house every hour to keep the muscles from weakening, I had to do that on Carbo Taxol, My gemzar was reduced but it didnt affect the overall result. It is great you have some one to call you to see how you are doing, that does not happen in Ireland. Well ditch the cranberry juice. Do you eat a lot of beetroot or anything red because this can colour your urine/

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Hi Suzuki,

Thank you for replying. I've found these for you -

cancer.ie/how-we-can-help/s...

arccancersupport.ie

mdsireland.com

hopesupportcentre.ie

I really hope that one will be helpful to you and other Irish lasses.

I don't really like beetroot but I know how my pee looks after eating it. Scary. I drank so much cranberry and water last week that my pee lost its colour completely. TMI. I'll start the walking again once this flipping rain stops. I'm helping hubby build an ark this week. We launch in about 40 day's time.

Love Kryssy xxx

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Hello Kryssy

It may be your CA-125 levels are no longer a good indicator of what is happening to you. The scans are what matter. I've never had Avastin but I know a number of ladies are taken off of it because of side-effects or because it stops working. If you are left with a large disease burden at the end of carbo, they'll start you on something else. If the disease burden is very small, you may have a holiday and find you are stable.

It's the not knowing that's the worst. Hoping you get the chance to have a good chat with your man next week.

Cant think of any jokes right now, always the way. Disappear into the ether just when they're required, especially the punch line.

Your sense of humour is fantastic.

Take care now and I hope you hold it together when your sons call.

All the best!

Helen

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Hi Helen

Got through the phone calls, not lying but limiting the truth to bare facts i.e. CA125 still going down, which is true and then moving on quickly to the good news of no infection and returning to normal diet. No tears and plenty of laughter and love. Phew. Thank goodness they don't read this forum.

One day I'll tell you my favourite joke. Favourite because it's the only one I can remember. Naturally it's rude.

Love Kryssy xxx

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Kryssy,

I am thinking of you lots...you poor lass as they say up north! You still retain your amazing humour, please don't ever lose it! Wishing you better times and good news very soon. Take care Clare xx

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Thank you so much, Clare. You have warmed my cockles. Love Kryssy xxx

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Don't be too disheartened, mine is 261 and I'm stable. It went up on 4 out of 6 chemos. We all place a lot of faith in the CA125 yet the scan will be your best way of seeing how you are doing. The CA125 could have gone up because of inflammation in the pelvic area hence the wee saga.

I hope you bent the ear of your support worker, off loading is good for the soul.

To me it sounds pretty good, wouldn't mind a 132.5 and I never thought I'd say that ever lol. Chin up we're all rooting for you, drop me a message any time

LA xx

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Once again I'm blessed by your wisdom and support Lily-Ann. Thank you poppet. You Always keep me focused. I promise to keep my saggy chin up. The wrinkles look less that way too. Sitting up in bed eating chocolate and watching the wallies in the jungle. Oh, how the other half live, ay! See you on the cyber network soon. Can you get me a stick of rock with Tenerife written all the way through it?

Love Kryssy xxx

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Don’t forget my ca125 was wrong all way through!

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Hi Kryssy,

I am just curious why did you discontinue taxotere?

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Hi worried husband.

Thank you for replying and sorry I missed out all you chaps out there, who are here to get help and advice for their special person, in my message opener.

For a start I'm not normal. A well known fact to my family and friends. The Taxol part of the first chemo mix hospitalized me with partial paralysis from peripheral neuropathy. Couldn't walk and lost use of my right arm and half my left from hand to elbow. Only morphine drips touched the pain. Horrible, but thankfully being slowly reversed by herbal amino acids, excercise and massage. So next round changed to taxotere. After two days the vomiting started. Couldn't even keep water down. After ten days - should not have gone so long - was rushed off to A&E with really low blood pressure but rapid heart rate which was struggling to keep me alive. I lost nearly 10kg in ten days. Again not normal. So, decision was made to give me carboplatin and avastin only and after some weeks I got better and my weight increased a bit and stayed stable and I now eat (healthily) like a pig. No sickness or nausea this last month. Fabulous.

You have asked me the question for a reason but please don't panic as it is rare for people to react the way I did. I don't even have normal cancer. Didn't know there was such a thing.

I do hope this has answered your question.

Kryssy xx

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Well, my wife’s not so normal either. She almost had an anaphylactic shock with Taxol on her first chemo and was switched to Taxotere for the second round. 10 days after the infusion she was hospitalized for neutropenic fever, rapid heart rate, strep throat and colitis. WBC was 1. After several days in the hospital, IV antibiotics, etc. she recovered and we continued chemo with Neulasta OnPro for the remaining sessions to keep her wbc in check.

I wonder why your onc didn’t try neulasta. Taxane-Based Chemotherapy is proven to work for ovarian cancer.

Wish you best of luck.

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Good morning WH. When I was on three weekly chemo I got a neulasta shot in the tummy after two days but since switching to lower dose weekly chemo I can control my blood count with a healthy diet as normally neulasta isn't necessary for weekly chemo. I've always leaned towards the anemic scale but stay pretty well clear of bacterial infections. Never take medications unless vital to survive, like now. I think by cutting out potassium with iron foods for a week to reduce the potassium in the blood it has made the blood count drop too low. Potassium level was the same so I learned to look after the blood first and worry about the kidneys and low blood pressure second.

I've decided to ask if I can try low dose taxol weekly for the remaining three weeks now that I've learned how to cure the neuropathy. Fingers crossed.

Sorry to hear your wife has had such a bad time too but it sounds as if she's got the best person on her side. You!

Best of luck to you both too. xxx

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Catching up with my reading of replies to posts, sometimes I miss them. Just wanted to say that if either your onc is unreceptive to you having weekly taxol or you have it and react again, it still may be worth considering on its own in the future. I have now had slightly more than the equivalent of two three-weekly cycles and I know that my neuropathy in both hands and feet is nowhere near as bad as at that time point when I was also having carbol.

I know I was nowhere nearly as badly affected as you though. It maybe that the carbol exacerbates this propensity in taxol to affect some. Wish the powers that be knew why some don't get neuropathy at all.

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Thank you for that, Helen. I had noticed that some of the girls here have taxol only and I wondered why. It's definitely worth mentioning on Tuesday. I hope I don't buckle. I can fight for anyone about anything but for myself I go all wibbly wobbly and forget what to say. Or I cry. Not a good look at all and no-one pays attention to a snotty, dribbling fruitloop.

I'm sure you are right about the carbo and the neuropathy because each week on the second day after chemo my finger tips tingle but it goes by the end of the next day. To be honest, I don't mind getting the tingles, numbness and pain again so long as it doesn't put me in hospital. Don't even mind losing the tiny bit of hair that just started to grow back. I just want to be given the chance to attack the cancer and I know that carbo/taxol is the best combination.

My dear friend has advised me to say that my mental health is being affected by me not being given the right thing for the job - or something like that. She's coming over on Monday to get me to practice what I have to say in a firm and simple way, without blubbering and rambling. Unfortunately she won't be able to come with me on Tuesday. I could record her onto my MP3 and stick my earplugs in the onc's ears and just get him to listen. Or perhaps not. Yes, my mental health is certainly an issue at the moment.

I'm going to look up exactly what avastin does. I know it's an inhibitor but I don't like googling as it can throw up all sorts of statistics etc. which is not good. But, when needs must and all that....

Yes, some get neuropathy and some don't. It's a mystery to the medical profession I think too. I'm doing ok. The L-Glutamine and Alpha Lipoic Acid are doing their job and the neuropathy has almost gone completely in a very short time. My onc is amazed at the recovery.

Thank you for taking the time to help and console me, Helen. It is very much appreciated. Bless you.

Love and hugs to you.

Kryssy xxxx

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I know exactly what you mean it's easier fighting the corner for someone else but quite difficult to do for yourself. I mentally tell myself I'm acting and these are the lines I must say. It doesn't work properly but at least it works to a degree. It must be doubly hard for you having to do this in French too. You're obviously fluent but it still must be v. difficult.

The reason why some of us are given taxol only, is because we recurred within three months, either from the initial cycle or a subsequent cycle. it's thought that there is no point giving more carbo although I think there are trials underway to see if the cancer can be re-sensitised to platinum. If someone has a long remission, or at least more than six months, they often get carbo and taxol again.

As far as I know Avastin blocks something that helps the cancer grow blood vessels. Without the blood vessels it cannot grow.

Take care now! It snowed here today, for five minutes! More expected hopefully!

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Hi Kryssy.

Wow. You’re going through a lot.

I was taken off avastin after number 13. Two reasons. One because it was creating too much protein in my urine and two because my CA125 was rising whilst on it. It gave me nosebleeds and aches and pains. My new consultant says he doesn’t think much of it. It works for some.

You’ve a lot going on and no wonder you feel emotional etc.

I can’t think of a good joke at the moment. 🤔

We are all here for you. Keep us updated.

Sending you a big heartfelt hug. Xxxxx

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Hi Suzanne.

Your big hug has just arrived. Thank you. It's enormous. Hardly any room in the bed for it. I'm wide awake mulling over yesterday's events. The snoring beast slumbers on. I'm not feeling sad though as my heart is full of love from you all. Another day looming to be alive and enjoy the birds feeding at the seed supermarket, the falling leaves, the change in the view across the valley and the preparations for Christmas. Got my birthday looming too. December will be wonderful.

Big hugs to you and everyone who helped me yesterday. You are all the special people of the world. XXXX

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You are a positive and very inspiring lady. I’m sending another hug for you - and a klaxon sound for the snoring beast.

Enjoy your day and look forward to a lovely Birthday soon

Xxxxx

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Hi Kryssy - regarding the CA125, you may never get to the magic 35 and you can still feel ok as long as the disease is controlled and stable. So, as some ladies have said, don't get too hung up on the numbers. The lowest I've been was 20 after first line treatment (I started at 13,500!) then I had a year on Avastin where the CA125 fluctuated a bit for no particular reason - in the end I took my nurse's advice not to know it, as the ups and downs messed with my head, and I just got on with my life and felt ok and relied on what my onc said about the scans and my general health. Yes, there were some aches and pains and muscle stuff on Avastin, but as long as I kept moving and exercising I was ok. I got to the end of 18 treatments in Feb 2017 and stayed off treatment till July. The word 'remission' was never used - I was just stable for a length of time. I guess what I'm trying to say is that things keep shifting, the pattern can go up and down, and you can emerge ok in the end. It's about controlling, not eradicating the disease, although I wish with all my heart that it could be eradicated for us all. Wishing you all the best, Christine x

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Thank you Christine. You have reminded me of what I was told right at the start of this dodgy business which was that I'll never be totally free of cancer but it can be controlled. I accepted it then but I think I've been lured into believing it will all go by my family, especially my children. I'm back in reality now and so long as my quality of life isn't jeopardized too much then I will be happy. Thank you for your wise words.

Love Kryssy xxx

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Kryssy, there is no end to the times I have to be told I have cancer - I'm like that fish Dory in 'Finding Nemo'. 'Who, me? Cancer? Did somebody say cancer?' Other people have such high expectations of you 'winning a battle' (a phrase I dislike) and it is important - and difficult - to get the right balance of realism and optimism. Any kind of blow from the disease and you have to regroup. I think to get on with enjoying your life you actually have to be a bit in denial and push it to the background - that's what I try to do anyway.

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You are absolutely right, Harpist. Most of the time I forget that I have "Fluff Balls" so it doesn't occupy a lot of my thoughts. It's only when it squares up to me in tests, chemo or doctors that I realise I've a problem. I have always enjoyed going to chemo as I get a lovely time knitting, listening to music or playing on the Kindle and then sleeping. I love chatting to the nurses about all sorts of things and it helps my french too. Probably because I've always had problems but have always treated them the say way - deny, deny, deny and bugger off and leave me alone. I only ever realise I have MS when I have an attack - maybe only twice a year - and the rest of the time it's forgotten. I think a member of the Beach Boys once said, "I have MS. MS doesn't have me". Perfect. I don't even think of the Lyme's at all to be honest and it doesn't really affect me and the brain tumour never enters my head (ouch! bad pun) until I suddenly remember that it's a year since the last scan and then think a bit, not worry, for a couple of days before the scan. But not a lot. What will be will be. I'm in a good place today and will stay that way for a long time. Even the sun has just come out. Live is good.

Love Kryssy xxxx

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My ca125. Is 140 I feel great

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Hello sweetie.

It's so lovely to hear you so positive and happy. How is your treatment going now - are you still on the hormones or did you get an alternative? I have stopped thinking about numbers now as I realise that we are all different and like age, it's just a number and not really how we feel inside. Quality of life overrides everything until it's time to sleep.

Keep well and feeling great.

Lots of love

Mumsie xxxxx

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Kryssy I’m rubbish at jokes so that is not going to be thing here from me.

However, my past year may be of interest to your situation. It’s long but stick with it.

Synopsis: 6 carbo taxol first line, big row about operation, second opinion, finally op in December but after chemo 6 so no chemo to follow up. All visible signs of disease removed. BUT CA125 never went below 151. Avastin continued after op. Every 3 weeks it went inexorably up. Never felt like I had the chance at remission.

Sure enough in May scan showed “sticky tethering” (?) on bowel and nodes growing etc. Avastin knocked on the head.

June second line chemo, 18 weeks of carbo taxol (3 on 1 week off, with big 6 week gap for once in a lifetime trip to USA). I had anaphylactic shock to the carbo and had to have desensitised regime since then (4 bags of carbo at over 1.5 hours each instead of one bag, but it has worked). This week is my last week of chemo. I’ve literally been on my knees towards the end and can not wait to ring that strange My Little Pony-esque bell when I’m finally finished. My CA 125 is the lowest it has ever been. Not had the latest yet but last week it was 72, down from 2865.

I’m telling this story because I felt like it was all going to hell in a handcart, that it just was going to be too much to deal with so short a time after the first lot and that it all seemed such an uphill struggle. Yes, it has been hard, but we are made of “human Kevlar” as my son put it and it can be done.

You’ve got this.

Xx Netti

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Thank you Netti. Wow! What a story. I've already been told that surgery isn't an option for me. Trouble is, I didn't ask why. It's on my list for January. It seems surgery is usually done mid chemo so that after the following chemo mops up anything remaining. Maybe I've got too much going on for surgery. To be honest I tend to go to appointments with everything in my head instead of writing it all down and then when I get home remember it. I've a big long list for January's consultation but I'll be seeing my onc on Tuesday at chemo but only have a brief time with him a he has to get around to everyone before he starts his regular clinic. But I'm determined to ask to have weekly low dose taxol for the remaining three weeks. I sort of know what the answer will be but if I'm willing to take the risk then surely I should be given a chance. We'll see.

As for a second opinion, it's knowing where to go. The hospital I go to is highly regarded, the best being in Paris of course. But, I will pursue it if I don't think anyone is listening to me. I suppose the GP will be the one to advise me on that. So far I've been given the best care possible, as far as I am aware. But, it's the first time I've had Fluff Balls - that's my new name for cancer as the C word seems to scare people - so it's a learning curve.

Thank you for your reply Netti. It is inspiring me to ask questions more often. I'm so sorry you had a rough time too. Thank goodness you are still here to tell the tale. I'll polish up my suit of armour in readiness.

Love Kryssy xxx

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I just wanted to give you the idea that there is a road, that you can travel it and that you will make your own stops to admire the view and to ask for help along the way. Oh get lyrical me...

take care my lovely

Xx Netti

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I'll do my very best and thank you. The road seems smoother today. Kryssy XXX

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What a rubbish week you’ve had love, so firstly I’m sending you big big hugs over the channel and, of course, lots of love 💕 .

I have no experience of avastin but I know other ladies here have described many different symptoms including pain so it may possibly be an effect of the drugs you are experiencing and one size certainly doesn’t fit all so even though it works for many people it doesn’t for everybody. I was absolutely fine with taxol yet you couldn’t tolerate it at all, shows how different we all are.

As we all know we are super sensitive to any slight changes in our bodies and most probably always attribute them to this bloody awful disease and we too know that the CA125 readings can change for all sorts of reasons including infections and reasons other than the cancer, your lymph nodes could have been up if you had had an infection and possibly the massive doses of cranberry may have blitzed it and like Lily says your reading may now not be a good marker for you now so don’t hold too much store in it until you have had all the test results in and you have been able to have some quality time with your main oncologist and you have all the pertinent information so you are able to formulate the best plan for you going forwards.

I am rubbish at jokes but I remember when my eldest son was born and we were stuck in hospital for 11 days due to him having galloping jaundice, I was crawling the walls with frustration and slight baby blues, I picked up a magazine and there was a poem in it which made me chuckle and really brightened me up, it could be my weird humour but I’ve never forgotten it so will share it with you and hope your fantastic sense of humour will be able to embrace this and maybe make you smile a little so here goes nothing.............

Since I hurt my pendulum,

My life has been erratic,

The parrot who was cordial,

Is now transmitting static,

The carpet died,

A palm collapsed,

The cat keeps doing poo,

The only thing that keeps me sane,

Is talking to my shoe.

I don’t know who wrote it, it was apparently discovered on the roof of a camper which brings all sorts of images to my very odd imagination but it still makes me smile 37 years later and kind of sums up life in a way (told you I was odd 🤣)

Take lots of care and try not to panic too much, we’re all here for you in any way we can be. More love and hugs 🤗❤️Xx Jane

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Hi Jane. Loving the poem. In my weird world the shoe would probably talk back.....

I'm happy today - mainly because of all the support I've had from my fellow soldiers here - so numbers, zumbers, they can all bugger off. The sun is shining now so we'll hold off building the ark for a while and I'll stroll around the garden watching hubby picking up leaves with his super duper blowing machine - in reverse. It looks as if he's hoovering the garden. He can do the house next!

My bum aches from sitting on it so long. That's my laziness - nothing to do with avastin. Come on body - shift!!!! That's me told. I'm off.

Lots of love Kryssy xxxx

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Oh Kryssy, sounds as though you are having a rubbish time. I didn't find the Avastin had many side effects for me, except on my mood and strangely my toe nails, which seemed almost bruised and still haven't recovered fully almost a year later. I had Avastin by itself for quite a while, finished last December. I'm not entirely convinced it did much for me, I had a recurrence this April/May. We all have to try what we can, some of us find it works, some don't. I'm sending you big hugs and hoping things get better for you. And don't worry too much about your CA125, it's high but not that high. Sue xxx

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Hi Sue and thank you for your big hugs. They arrived safely and are stored about my personage. So sorry you have had a recurrence. I know I'll never be free of the beast. How are you now?

I've been really well since weekly carbo/avastin but did wonder if stopping the nasties would have an effect as one day the on duty onc at chemo questioned why I had stopped and then said, "Well, it won't be as effective". Oh, such a lovely bedside manner - not!! I know it's their daily job but it's our one and only life. Thankfully he's not my onc.

I must away and do something useful. I'm feeling a fraud being lazy. Take care and massive hugs to you too.

Love Kryssy xxxx

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Hi Kryssy--are you sure there is no room for one more hug? What everyone above said! But also, would you possibly consider a second opinion about all that is going on via internet? Once things get "complicated" it may really help for an oncologist on the outside to see all treatments, your [sometimes severe] reactions and offer some other treatment options should your ca125 start to rise or scan shows the need for more treatment? I know Dana Farber in Boston has a 2nd opinion dept that is only by internet (it costs US$500) and I am planning to use that when I need it too. dana-farber.org/appointment...

Just seems to me there are so many things STILL in your arsenal that should be tried if and when you need it. In the meantime, I hope your counsellor was VERY helpful and you are better from all these people who so obviously love you! Sending BIG virtual hug and get a chair if needed to put the extra hugs close to you.

oxoxo Judy

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Hi Judy. I wrote you a personal reply this morning but it's gone. I hope you haven't felt left out. I'm so sorry. I can't remember what I said now as it was hours ago. Thank you for your hug and kind words. Twice now my onc has written a note to self about sending me to see the neurologist to find out why I reacted so badly. Each time he's forgotten. C'est la vie. When January comes and I get my next PET and go through it with him, I'll ask all my questions and if I'm not happy I'll ask for a second opinion. It could be the odd weekend in Paris. Can't be bad. Doubt I would get the free taxi there and back though. It's about 3 hours by fast train. Time will tell.

Love Kryssy xxx

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Hi Mum don’t worry they will sort u. Maybe an alternative maintenance?

Hey they sorted me right. 😂🙏 well I hope xxx

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Hello again my petal. When I read you like this it gladdens my heart. I know what a dark place you have been in. I'm so happy now that you are out in the sunshine and enjoying life. Lots of love to you, hubby and dearest Ellie. Keep it going - if only for my sake.

Lots of love and hugs, Mumsie xxxxxxxxxxxxxxxx

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This is the zena I am silly and blonde. Didn’t like that zena previously x

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That's my girl xxx

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I’m glad you are feeling better too, Zena. I was worried about you xxx

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I blame the drugs 😂

Thanks Hun x

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Vicki how r u ? I’m guessing your halfway through now ? 💪💪

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Will be officially half way through tomorrow! Should have been today, but I’m having my port fitted and chemo on the same day, and they only do ports on Thursdays apparently. Vx

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Yaaay gone so fast x

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Hi Krissy, we certainly get some discouraging news and my heart goes out to you. While going through chemo I sometimes wondered if the cure was worse than the disease! It’s not really! My friends call me Susy Sunshine because I am rarely down so I totally get that it does happen. I’ve been on Avastin maintenance for about 4 months now and my CA count recently went up but my CT scan showed absolutely no progression. Apparently the Avastin itself can affect the CA count. I’ve been getting a pinching feeling in my lower abdomen which you mention is due to Avastin. I’ve also had muscle aches so to combat those I go swimming as often as possible to stretch out my muscles. Let yourself have a pity party once in a while and I send you hugs for those days but then put on your big girl panties and face the world ready to keep fighting. It’s really the only way to get through this. Hope you feel better soon!

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Hi Susy Sunshine. You have certainly sent some sunshine my way. Thank you for that. Having a good day so far without the blues so all these hugs which keep arriving by the shed loads are doing their job well.

I've only got big girl pants now as I've lost 25kg (4 stone) since July. I'm like a saggy baggy old crinkly body with too much skin that needs running up on the sewing machine. No matter how much I eat I don't gain but I've stayed stable these last few weeks which is good. No more tickings off from the chemo nurses either as they don't like us to lose weight. I must have needed to lose it though otherwise it wouldn't have come off and still left some meat on me. Had to give all my clothes to charity and get new ones, from charity shops of course. Few and far between here but the Red X in my local town is brilliant. Hubby reckons I should have held onto some of the originals, just in case.

I was told I'll continue with avastin after the carbo stops and be on that for a year to 18 months. But what does it do to the cancer cells still alive after carbo stops? I thought it was just to stop new ones growing. That's what inhibitor means to me. I'm just hoping that it does continue in January as I don't know when a new lot of chemo can start after this lot ends on 19th Dec. Another question for my list. I wish now I had asked more questions in the beginning. I guess I have been a bit backward in coming forward. Not like me at all. Perhaps subconsciously I'm trying to avoid bad news. That's not like me either. Come back Kryssy - where are you???? .....

Thank you for caring. I don't swim unfortunately. I like a nice soak in the bath with candles and a glass of wine. Does that count?

Love and hugs to you too.

Kryssy xxxx

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Have you got room for any more hugs? Hope so. I am due to have more chemo in February after Xmas and a holiday. Important things must come first. but I had a surprising phone call last week from another hospital asking me in to come in talk about trials. When I arrived I had to go through all my notes again. She asked me if I had suggested surgery and told her I had but was told I was not suitable. She disagreed and suggested I start the chemo and go to see her again after three sessions. Hopefully ( which most people would think weird) I will be eligible. So definitely worth for a second opinion.

Joke

Little boy in wigwam with father, he asks, how did I get my name. Dad says, after a child is born the father looks outside the wigwam and the first thing he sees is what the child is named. Your uncle is Big White Cloud, your brother is Running stream. Why do you ask Two Dogs F***ing.

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Kryssy I can’t say anything relating to your treatment but I am sending you virtual hugs and kisses.

Hugs Ellsey xx

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BRILLIANT!!! A big laugh out loud joke. Love it. Got to pee now cos of it........

I'm back. Reminds me of my second son's birth. I don't get labour pains(yes, women hate me) I just sort of had them where I happened to be. My number two was born right beneath the Christmas tree in the sitting room. I'm glad I didn't follow the Indian custom and call him Sparkly Balls. But, I digress as usual.

Thank you for sharing your story with me and I think I'm going to fight a bit harder for the right to be heard in future and not just accept what I'm told verbatim.

Yes, plenty of room for more hugs. They have been like a big snuggly blanket around me all day. Thank you so much.

Good luck in February. I'll follow your progress. Hugs to you too.

Love Kryssy xxx

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Ah Kryssy! So much love in this post, but I’ll squeeze a little bit more in on top😊

From what you’ve said, I take away the positive that whilst the CA125 hasn’t gone down loads, it has still gone down a bit...good news! Whilst it is decreasing, I imagine they will continue the Avastin. It only seems to be stopped if the CA125 is rising, or it is causing other problems. Fingers crossed that’s the case 🤞

Chin up chickadee 🐥 ☀️🌈

Vicki xxx

There were two goldfish in a tank. One says to the other, “Who’s driving this thing?”

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Vicky. Now if the Goldfish were changed to Carp in a tank, we,d need room for a multi- storey Carp Ark ( with flood lights). Ugh, sorry, this is all that darn Irish womans fault!.

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Hold up!! I think there's something fishy going on here. xxxxx

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Morning sweetie, hope the skies are a little brighter your way today. I,ve realised what you,re up to Kryssy, a cunning plan to build a hugs mountain before Brexit. Ooh, hope you are snuggy your side of the water, it is freezing here!. Here,s another hug winging its way to you!!!. x x x

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Oh no!! I've been rumbled. But, you can't get me - my hugs will keep me safe, including the one you just sent. Received and nestling beside me. However, it's funny you should ask how things are here as just this minute it's started to SNOW!!! There wasn't even a frost this morning so what's going on? Don't care. Nothing is going to make me gloomy today and I quite like snow, provided I'm inside and warm. Snow wasn't forecast until December so the world's gone mad - again. Must keep those bird feeders topped up as they'll suffer now. It costs a fortune to keep them going but so worth it. I can see our beloved Alfie's grave from here. It makes me sad to think of him out there in the cold. It's still quite raw as we only lost him in July. Miss him so much.

Think I'll have to change building an ark to a snowmobile. Hmmmmmm.

Love and snowballs

Kryssy xxxxx

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Thank you so much Vicki. I'm going to sleep well tonight. Isn't it strange that once you know what a pain is and it's not the bad thing you thought it was, it doesn't seem so bad anymore.

Bless you for the joke too. Another laugh out loud one. Thankfully I had just been to spend a penny so no worry about a spillage.

I'm all glowy inside with all the messages I've had today and most of all the hugs and love. I wish I could have you all round for lunch next week to help me celebrate my birthday but I couldn't afford to pay the air fares for you all.

Love and big hugs Kryssy xxx

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Here u go - Ellie’s new word - Mum poo and piece...😂

Mums goes 4 a poo in piece 😂

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Your sense of humour makes me laugh. Which is all we have in rough times. Hopefully you will have room on the ark for me. Sending love and hugs across the world 🌎. Sharon in Queensland Australia. 😊

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G'day Sharon.

Thank you so much for your love and hugs. They are very much appreciated and I'll keep them safe. You will be welcome on the ark but my building skills are not that good, even though I'm a mere builder's assistant, so best bring a rubber ring in case of emergencies. Take good care of yourself.

Love Kryssy xxx

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