My Ovacome
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Has anyone seen my big girl's knickers?

Hi all. As promised, my results. Not good though.

The carbo/caelyx has done zilch and all the tumours have marched along merrily this last six months as the avastin alone didn't do anything either. I'm going to start on Hycamtim in two weeks, once the carbo/caelyx is out of my system. Chances are I'll lose my hair again but I won't have the skin problems. No more dust then. I'm also carbo intolerant now so no more of that, unless I'm still around in a year or two and they try again. My onc was so sad. He cannot hide his feelings so I knew as I walked into his office what to expect. But, it still came as a shock. I was ok the day after but today I'm really down. Can't stop crying and most of it is because this next treatment is weekly for three weeks and one week off which means we have had to cancel our trip back to UK. I shall miss my best friend's birthday, my grandson's birthday, my daughter-in-law's birthday and my own pre-birthday party, as well as seeing my precious boys again. It has hit me very hard and some low life has stolen my big girl's knickers from me.

Don't know anything much about Hycamtim - think it's called Topotecan too - as I don't want to google too much. So, any anecdotal advice will be welcomed. My mind is telling me that the best options have eluded me now and I'm on the slippery slope to the end. Hubby's brilliant of course but I know he's hurting. We are both so disappointed. Onc assured me that I'll still be here to celebrate my actual 70th in December, unless I get knocked down by a car. A big stick-out-neck thing to say but I'll cling to that. I'll come back and haunt him if he's wrong. He said a couple of times that he has lots of drugs to try and he'll keep going until he finds the one for me. His dream, he said, is to take a piece of tumour and hit it with all the known chemo's to see which one he can give each patient. His eyes actually filled up when I said that perhaps for our children or grandchildren but not for me. I am so lucky to have such a wonderful onc who is still passionate about his work and so caring about his patients. So often they become blasé and cold.

So, if anyone has seen my big girl's knickers would they please send asap as I really need them at the moment. Love to you all xxxxx

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Oh Kryssy , so sad to read this , I’m new to this horrible disease so don’t know what to say , you are a very brave lady , always offering support and kindness. Do hope that your new treatment plan is successful and tolerable. Sending love and prayers xxxx

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It sounds like you have the best man looking after you and it sounds like he is going to do everything he can to keep you well, what more can anyone of us ask . Please keep up your spirits and if I see your BGK I will send them across the channel xxJuliaxx

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Ah cr*p, Kryssy. Just hope you get to start the new regimen quickly, so you find the one that shrinks your tumours.

Very sorry but I am not giving away my big girl knickers.. 'cause even with them on, I'm still the biggest sissy in town. Wouldn't stop running ever (while keeping head firmly lodged in earth, a la ostrich, carving a furrow around the globe) without them.

But I do have a very positive association with Hycamtin for you, so hopefully the knickers won't be needed:

The interview for my current job role happened in a meeting room called Hycamtin ... and against the odds I got the job, which enabled me to return to Germany. So.. 'Hycamtin' worked for me.. in a way :) . It will work for you too.

Try to keep as well as possible until you find the right chemo. I'll be thinking of you. Hugs, Maus.

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Oh Kryssy, so sad to read your news. Want to cry and shout and scream but won't as will terrify all my neighbours. Just sending a great big hug and loads of love to you and your super hubby. So sad for your family too.

Hope you find those fighting knickers very soon. Love, Solange 💐🤞

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Oh my sweet! 😢 if I can do anything let me know and I’ll do my best! I would love to find a cure in our lifetimes but I think it’s about 3 generations away! I don’t know why they can’t take pieces of the tumour and test it on everything available to see what reacts best then treat that way xxx

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Its not over till its over - keep fighting! Love and hugs Lyn xxx

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Kryssy, you are so courageous, and at the moment you are also perfectly entitled to feel the way you do. The support we have from the folk around is invaluable. I am interested to hear about your oncologist’s desire to test your tumour for the right chemo. I went to the Medical School in Birmingham a couple of weeks ago to see the work of the research scientist funded by Ovacome - this approach seems to be what they are working for in the future - personalised tumour testing. We can but hope!

I am really feeling your sense of loss over cancelling your special events, somewhat selfishly too as I won’t get to meet you this time. There will be other times.

Now, those knickers are simply in the wash somewhere - have a hunt for them, make sure they’re clean, haul them on and let’s give this another shot.

Lots of love and hugs, Ali xx

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Oh Krystal. Sending huge hugs and loads of of love to you and your family. Am sure you will find those big knickers soon fingers crossed the new treatment works for you xJenny 💐

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Sending loads of support and best wishes that the next treatment is successful. Sending hugs and strength your way.

xx Gina

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Oh dear God , what complete crap news . You are always so amazing but this stinks , all so difficult to deal with , as i know only too well . Better to cancel as much as possible , get your energies together and focused . Head for the 70th ( which is what I am trying to do too . ) The Oncologist will keep trying , no doubt about it ....they are human , want to give us gifts of time ....remember , It's not over until the Fat lady sings . Keep close to that loving man of yours , let him find the big knickers , and if not some new lacy ones ?

My very best wishes to you xx

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Dear Krystal,

What horrible news and how bittersweet that you have such a passionate Oncologist.

I am gratified that he is searching for innovative ways to fight this next battle.

So I am researching Hycantin.

I wish you all the luck in the world,

Best wishes,

Laura

And here it is. Can’t help it,

Have to research anything new:

Generic Name: Topotecan

Drug type: Hycamtin is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug. Hycamtin is classified as an "topoisomerase 1 inhibitor." (For more detail, see "How this drug works" section below).

What Hycamtin Is Used For:

This medicine is used to treat cancer of the ovaries when other treatments have failed.

Hycamtin may also used in certain types of lung cancer (small cell lung cancer).

Note: If a drug has been approved for one use, physicians may elect to use this same drug for other problems if they believe it may be helpful.

How Hycamtin Is Given:

Hycamtin is given through an infusion into a vein (intravenous, IV).

The amount of Hycamtin that you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer or condition being treated. Your doctor will determine your dose and schedule.

Side Effects:

Important things to remember about the side effects of Hycamtin:

Most people do not experience all of the side effects listed.

Side effects are often predictable in terms of their onset and duration.

Side effects are almost always reversible and will go away after treatment is complete.

There are many options to help minimize or prevent side effects.

There is no relationship between the presence or severity of side effects and the effectiveness of the medication.

The following side effects are common (occurring in greater than 30%) for patients taking Hycamtin:

Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.

Nadir: 8 -11 days

Recovery: 14-21 days

Nausea and vomiting

Hair loss

Diarrhea

These side effects are less common side effects (occurring in about 10-29%) of patients receiving Hycamtin:

Constipation

Fatigue

Fever

Abdominal pain

Bone pain

Weakness

Mouth sores

Poor appetite

Rash (see skin reactions)

Shortness of breath

Cough

Headache

Not all side effects are listed above. Some that are rare (occurring in less than 10% of patients) are not listed here. However, you should always inform your health care provider if you experience any unusual symptoms.

How Hycamtin Works:

Cancerous tumors are characterized by cell division, which is no longer controlled as it is in normal tissue. "Normal" cells stop dividing when they come into contact with like cells, a mechanism known as contact inhibition. Cancerous cells lose this ability. Cancer cells no longer have the normal checks and balances in place that control and limit cell division. The process of cell division, whether normal or cancerous cells, is through the cell cycle. The cell cycle goes from the resting phase, through active growing phases, and then to mitosis (division).

The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division. Usually, the drugs work by damaging the RNA or DNA that tells the cell how to copy itself in division. If the cells are unable to divide, they die. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink. They also induce cell suicide (self-death or apoptosis).

Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific. Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific. The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective. This is why chemotherapy is typically given in cycles.

Chemotherapy is most effective at killing cells that are rapidly dividing. Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. The "normal" cells will grow back and be healthy but in the meantime, side effects occur. The "normal" cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss. Different drugs may affect different parts of the body.

Hycamtin is derived from a plant. It is classified as a topoisomerase 1 inhibitor. Camptothecan analogs are derived from the Asian "Happy Tree" (Camptotheca acuminata). Podophyllotoxins and camptothecan analogs are also known as topoisomerase inhibitors.

Toposiomerase inhibitors are drugs that interfere with the action of topoisomerase enzymes (topoisomerase I and II). Topoisomerase enzymes control the manipulation of the structure of DNA necessary for cell division and replication.

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Thank you so much. The Happy Tree? Absolutely love that xxxx

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So sorry you’ve had this disappointing news Kryssy, this damn OC is so unpredictable isn’t it? The good news is that it sounds like you have a really caring and proactive Oncologist who really has your best interests at heart. It seems sometimes it really is trial and error with these chemo drugs so stay positive, and hopefully the new drug will halt the progression and give you many many more healthy years ahead.

I know it’s disappointing to have to cancel plans but focus on getting through these next few tricky months and you can rearrange once your feeling stronger again. Who knows, you might not even get many side effects and find this regime much more tolerable than the last? I’m on 3 weekly taxol/carbo at the moment and have honestly had no side effects other than hair loss and some tiredness (I was tired before OC anyway so no biggy 😅)

We are all behind you and sending you huge positive thoughts as you start this new treatment plan, sending massive hugs and tons of fairy dust 💖🌟💕🤞

Liz Xx

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Sorry that things have gone awry and that your plans have had to be altered - it gets harder to put on our game face and pull our big girl pants up with each setback but sadly we have no choice- at the same time as we are struggling with al our emotions , we have to knuckle down and endure treatment and that’s hard - wishing you peace and everything crossed for your hew regime - your oncologist sounds like a keeper x

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Sending you such a big hug Kryssy...no wonder those knickers have gone awol..but I am sure you will find them again. Look after yourself this weekend love xx

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Oh b****cks! I’m so sorry to hear the caelyx has done bugger all. It’s so annoying that you are also super-allergic to taxol, because that would surely have been the next option if you weren’t. I’m going to be on a variant of taxol called Abraxane which my onc assures me no one is allergic to.

I love the sound of your oncologist. I bet many of us wish we were in such good hands.

Always here for you, Kryssy 😘

Vicki xxx

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So sorry lovely lady that you’ve had shit news!! And so sorry you’ve had to cancel your plans x

Those big girl knickers have just gone to have the elastic repaired as they are a bit droopy after today but soon enough they’ll be pulled up tight round your middle again keeping everything together xx

Massive hugs and support being sent your way xx you’re an inspiration to us all and so funny I love your posts xx

So hope this next regime works for you and is tolerable xx also hope you manage to get over here again soon to celebrate but if you can’t maybe a whole load of us can come camp in your garden all wearing our big girl knickers which can double up as hammocks if the weathers nice x you will celebrate that 70th birthday just as LA will get to see Sarah Millican!! You’re a tough cookie xxx

Big hugs

Bev xx 💖💖

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Topotecan could be the one for you Kryssy. It is rubbish to have bad news but this is a possible and why shouldn’t it be you it works for?!

Let’s keep fingers crossed.

Take care xx Netti

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So sorry to hear your predicament, Kryssy. Did they mention cisplatin? Some of us who are carbo resistant have tried this with success (search Rotterdam regime) - my knickers are currently up round my ears doing some kicking with this. The other thing they can try is a hormone treatment like Anastrozole if your tumours are oestrogen receptive. Sounds like you have absolutely the right onc on board and that means more than I can say. xx

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How did it go this week? Are you home? X

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Hi Janet - yes it went smoothly, though had to learn how Department 1 works! We stayed overnight at Chancellor's Hotel and came home the next day. I was not too bad yesterday, but awake half the night because of the steroids and now I'm falling asleep in front of the tennis! Feel a bit tired and jelly-legged, nasty taste in mouth, but apart from that very pleased to have got two in and hoping it's working. Back next Thursday, morning clinic then afternoon chemo. x

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So sorry to hear your news Kryssy,here’s hoping this next treatment is yours.

Big girls knickers...... you can have mine! Caelyx has left my groins raw,been ‘commando’for months now.Big old cwtch heading your way. X

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Hi Kryssy,

Hopefully you will find your big girl’s fighting knickers amongst all the supportive messages here. I know nothing about Hycamtim but I hope it’s easy to cope with. It could be just what you need 🙏🖖

Oh, and I have my own big girl’s fighting knickers, I haven’t borrowed yours; yours are on this site somewhere, you’ve just got to hunt for them. Otherwise look In hubby’s cupboard - I’d suggest checking out your Oncologist’s office but that is just too weird😜

You will find them.

Lots of hugs,

Iris xx

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Sounds like your oncologist cares. In terms of taking a piece of tumour and hitting it with what chemo will work this has been going on for some time in the States. They do require a fresh tumour sample and I do mean fresh as I think it has to get flown there in 24 hours (but I might be wrong on the time frame). Your tumour sample is then tested with specific drugs to see which one(s) it responds to. I can't say anything pro or con with respect to the procedure however if you go to the Inspire site there is a lot of discussion about it, some of which is more broadly dispersed than simply on the ovarian cancer section. I have posted links to each of the 2 clinics I know of below that do this for cancer patients.

nagourneycancerinstitute.com/

weisenthalcancer.com/

It may not necessarily be feasible for you but it does take place.

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I'll take all this with me next time. Thank you xxxx

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Really rotten news, Kryssy, so sorry to hear it.....

Following on from RonLitBer above, I think this must now also be available in Europe too in some shape or form.

After all, this is what the Guardian piece I posted a link to last week (??) was about, about how the NHS was aiming to do it routinely, and starting pretty soon too.

If I manage to track anything down, I'll let you know xxx

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Mac27-UK, these methods share the trust towards less of a "one size fits all" approach and more of a personalized "precision medicine" design. They differ in that DNA testing will pick up genetics while what the Weisenthal does they call cytometric profiling and it is what nagourney does. They take a tumour and uses it in real time to see what actual drugs do to the tumour. Their claim is that a minority of cancers are the result of DNA mutations so this method only applies to a limited number of cancer patients while testing the actual tumour with drugs provides a visible discernible indication. Much DNA results are not known and many tests come back with "variants of unknown significance". I am not trying to promote this method just pointing out the difference. The Weisenthal site gives a lengthier explanation about the method compared to nagourney's site. When I asked my own medical oncologist about it she said she was not going to have a surgery performed to send a tumour sample away just to be told what drugs would work that she already knew would work. It would indeed be interesting to see if this is being done in Europe and who is doing it if you can find out. In hindsight the time to grab the tumour samples would be during the initial debulking.

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Unfortunately I'm not a surgery candidate but I'll follow it up anyway. My oncologist is always open to anything and he may already know about it as he keeps well up with what is happening in the US. Thank you xxx

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Yes, not everyone is a candidate for surgery. Your oncologist may know about this as well but I will just put it out there. It also may not be feasible for you. It may become feasible when your tumours shrink and some disappear due to the topotecan. It is a procedure called ablation and is used precisely when surgery is not an option. It uses different energy sources. The one I am most familiar with is the cold version but there are newer ones coming out as well. I don't know what is happening outside of North America and as Mac27-UK pointed out seeing what is available closer to home is advisable. The place I will direct you to is called the Karmanos Cancer Institute located in Detroit, Michigan. The treatment consists of inserting needle probes something like for a biopsy and freezing the tumours. The tumours have to be accessible, of a particular size (small) but I don't know the precise size. It also is limited by the number of tumours. It is not toxic and can be repeated. It does not deal with microscopic cells. They perform the procedure for metastatic ovarian cancer. You do not require a general anesthetic and typically no hospital stay is needed but sometimes they keep you in overnight. It is very cost effective. Where I live ablation therapy has recently been covered under our health care system for liver, lung and kidney cancers. sciencedirect.com/science/a...

karmanos.org/Video/View.asp...

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This area is all very interesting and thanks for the links.

From my experience, genetic testing of me produces zilch; tumour testing some potentially useful info.

What was heartening about the NHS proposal was its moving away from one size fits all, by disease type, to a more personalised, targeted approach by tumour type.

I appreciate this is a few steps short of what those two institutes say they are doing, but moving nevertheless in the right direction, I think.

One of the interesting talks (on youtube) at the Ovacome members' day this year, was Marcia Hall pointing out that it's now known that within OC, variations have common features with a whole host of other cancers.

To me that flags up treatment possibilities which under the current regime would not be thought of. If greater flexibility in prescribing results, this could only be a good thing.

This all feels close to my heart as I start weekly Taxol tomorrow.... how good it would be to be able to fast track and maximise chances of effectiveness...!!

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Kryssy. So sad and cross for you. Bloody OC. Have you looked in the bottom drawer in the spare room? Bet your BGFK are lurking in there. Wherever they are, they will turn up soon because your indomitable spirit is gathering itself to take over once more and get you through the next few weeks and months. We will harness all the love and support here so you can be flying back to see your family and friends in no time at all. Sending you a big hug. Love Jo 🌹🌼🌺🌻🌸

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Kryssy, that's such distressing news that the caelyx did nothing at all. Fingers crossed Topotecan will work for you. Hang onto what your oncologist said about there being lots of other drugs he can try too. It's a shame testing tumours for drugs that will work isn't main stream yet.

It's a shame you've had to cancel your trip.

All the best, Helen

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Awww Kryssy I do hope this new drug kicks butt! So sorry to hear yr news. Hopefully u'll find those big knickers! thinking of you and wishing you nothing but the best. Yr onc sounds amazing, wish they were all like that. Sending you a big gentle hug xx Kathy xx

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Very sad to read your latest update but here’s hoping that the new drug kicks this b.....d disease back this time. Sending hugs from across the channel. I always read your posts Kryssy we were diagnosed at about the same time last year I think, and went through our first treatments together.

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Oh Kryssy.

I feel so sad to learn this but your onc sounds amazing. There are lots of treatments. Something will zap the bastard tumours. I can only imagine how you feel. I don’t know what to write really just know that we are all here for you and please please know and believe that you will kick this little shit of a disease. You’ve had a blip.

Sending you and hubby lots of love and sending you some big knickers , cancer kickers.

You can and will do this. 👍🏻👍🏻👍🏻👍🏻

Hugs lovely lady xxxxxxxxx

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Hi Kryssy. Just sending you a big gentle hug and lots of love. Carolyn 🌸🌼xx

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Oh no. It's so disappointing. It's fine the big girl pants have fallen off! We just have to be how we are and know at some point, it will change! Everyone has said everything, as I am on Aussie time and joining the party late! but just wanting you to know I am thinking of you and sending big hugs and wishes from Oz and hope you get good news on the new drug.

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Kryssy - why don’t you go to England and start after, I would. Doctor will understand and surely a short delay won’t change anything much and the break will do you so much good. I am in UK now, living being away from all my medical appointments in Marseille- Nicola

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I did ask if I could delay until my return at the end of August and my doctor pulled a face and said he wants to start sooner rather than later bearing in mind the cancer has been growing for six months now without anything denting it and there are new lesions too. I would rather get on with it too. Are you not coming back to France to live? Take care xxxx

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Oh lovely, I’m sorry the treatment hasn’t worked this time, it’s so sad but there are new options and your oncologist is certainly on side, hopefully the new drugs will kick the little barsteward into touch. I know losing your hair is rubbish and I truly hope it’s worth it. It’s saddest that you have to miss coming home and will miss out on family celebrations but I’m sure they will all understand and you can still be there in spirit

I know nothing at all about your new treatment But I’m sure one of the lovely ladies here will know and be able to advise properly, I agree Dr Google isn’t always the best way to find stuff out and is often very wrong, your real doctors team may be the best source of info.

I have some big metaphorical knickers you can have, in fact I’ll put them on on your behalf and pull them right up so we’re ready for battle with you love.

Big big hugs and lots of love heading across the channel from me and I’m sure everybody here. ❤️Xx Jane

Ps you’re allowed to cry xxx

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Big girls knickers are on the way. I have become Carbo intolerant and had my first Caelyx on Thursday because the tumour had started to grow. It hit me very hard at the time just because I had suffered very bad side effects all for nothing. I made it to my 67th birthday a couple of weeks ago and hope I make it to 70, but can’t look that far ahead. I wish you all the luck in the world 👍💕 xx

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Hi Kryssy

There is not much I can say after reading all the brilliant advice you have had on previous posts.

Your oncologist sounds as though he will try his best to get you back on track, and hopefully the new treatment will work for you. I’ve got not no knowledge on your new treatment so cannot offer any tips.

I’ve just finished six cycles of Carbo/Caelyx (struggled to get there!) and have my scan next Tuesday, so it will be squeaky bum time over the next two weeks before getting results.

And like you I will be need my fighting knickers and cape on, so I hope you find yours very soon.

All we can do is keep catching what is thrown at us and get over the the next hurdle as best we can.

Sending you lots of good vibes, take care and keep as strong as possible! Xxx

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Dearest Kryssy I don’t reply much on here as dealing with ones own craziness is sometimes enough but your story is so so similar to mine I just wanted to say a little to try and help... I also went through a hellish time with Caylex Carbo and it was like someone had sprinkled grow more on it.. lots more tumours popping up around stomach sigmoid colon and enlarged lymph nodes etc - you know that story. It hit me hard a few days later S with you and the options ( a phase one trial that is risky or the awful sounding “ Rotterdam regime” which honestly could not take after the previous 6 months...) were such that I felt too I was looking at the end of the line. I cancelled my 60th big birthday celebs and ended up by weird coincidences in Manchester as an inpatient!! But the oncologist here was sooo kind and so hopeful ( well as much as they can be!!) that I have stayed up here to start ( and hopefully finish!) 18 weeks straight of Taxol again.

I have just started to lose my hair which although we say “ it doesn’t really matter as long as the stuff works!” It is let’s face it a bit tough. BUT despite all this - I’m in a much much better place! I am feeling tentatively hopeful again! I meditate every day again ( not for everyone but Chrissy please try! Headspace is what I use but lots of free ones on Utube etc) those big girls pants are back on and I’m fighting for the next round. We are searching Manchester for a house to rent and so hard on husband but I’m doing this for me finally - not worrying about everyone else family dog home in London etc etc.

I say take a deep breath now go and sit in that sunshine drink loads of water and flush your system of the horrid Caylex and you will be up on the dance floor for your 70th! I know that low feeling sooo well and please know tomorrow is another day - I say sometimes “ this too will pass” and it really helps. And the pain killers are amazing too!!:-) sending huge love and everything I can to you.

Tracey xxx🙏💕

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Thank you Tracey. Feeling a bit better today. xxxxx

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Predicable or not, this "down feeling" we get when something doesn't work (or there's a relapse") is the absolute WORST. It brings out all the worry, sad feelings etc and of course, your big girl knickers will be back--they just need time--we ALL need time to process bad news--then we get that strength back to move on to the next. Give yourself that time and as you tell others on this site, enjoy this day and the fact that you have a great onc, a great hubby and support everywhere (and more positives to get you through). I believe--as my oncologist believes--each person is so different in terms of what works and why and the fact that your onc said there's more to try, you will get that fighting feeling back. Would it be possible to get your tumor tested or have you done that already? Fingers crossed this treatment is "the one" and will knock it back for a very long time if it has the nerve to rear its head again at all. Thinking of you Kryssy and so sorry you will miss your trip you were looking forward to. I say plan it for when the next treatment ends....if you can. With hugs and hope, oxoxo Judy

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Thank you Judy. RonLitBer posted a couple of links which look interesting. I'm keeping them for my next appointment. xxxxx

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Kryssy, I agree with Ali - the big girl knickers must be in the wash! They’ll be waiting for you to put on soon. Your Oncologist sounds one special person, bless him. May this ‘happy tree’ drug be very effective. Love ❤️

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Yes! And I'm the culprit. I took all of our big girl pants (it was a HUGE load) but they're all nice and clean now and ready for our next challenges. Look in your underwear drawers, ladies.

Damn.

So sorry Kryssy. XXOO

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You little tinker xxxxx

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And on a serious note, here's a big hug for all that you're going through. XXOO

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So sorry Kryssy but I am impressed by your onc. I have heard of topotecan but don't know anything about it- wishing you good luck and let us know how it goes.

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So massively sorry you had to toss all your plans out the window, I think that's one the hardest and unpredictable parts of this disease.... making future plans.

You were doing so well being and thinking positively and looking forward.... it's such a bummer that this latest combo didn't work ... (However I think you know how I feel about caelyx ... 👎🏻)

Not heard of the treatment you mention but it sounds a good one so let's hope it works for you....

Meanwhile I send you a pair of knickers in every rainbow colour and as there are no icon images of knickers ( why not? ) I send you heartfelt best wishes and love instead.

❤️ 💜 💛 💚 💜 💞

Janet x

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Kryssy,

I am so sad and disappointed that you’re treatment hasn’t worked, all as I can say is your onc sounds marvellous.

I’ve got lots of big girls knickers here to share, I hope you’re new treatment works for you, you’re onc seems optimistic that he has other medications to try, and I have everything crossed that he is right.

I am sending you virtual hugs.

Ellsey xx

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Sending lots of love, you onc sounds really passionate and will find something else to get the job done. X

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Go ahead and cry. We all do. And tomorrow the sun will come up and it will be a little bit better.

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You must be so disappointed not to come over. Perhaps some of them can come to you. It's hard when you first get bad news but I find you sort of settle into it. There is good news, you'll be here for Christmas and with the great oncologist you have it could well be a lot longer. I worry about them sometimes with all the bad news they have to dish out.

Sorry I can't think of anything to say to cheer you up but I'll be thinking of you and sending as many good vibes as possible.

Big hug, Zena xx

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Hey Chrissy all you need at the moment is your positive thinking cap, those knickers will turn up when they are needed. Lots of love Bridiexx

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Oh Kryssy, I'm so gutted for you. Here's to getting your grit back. 💪💪. Love, hugs and strength to you. Xxx

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Dear Krystal

I can just feel your disappointment coming through in your post. I can also sense that great courage of yours coming through too. I really just want,to wish you success with your treatment . I have never heard of Hycamtim but that great Oncologist of yours seems to be ahead of his game with something always up his sleeve. I wish all oncologists were like that. It’s so disappointing to be missing special occasions with family but loving hubby is there and please God there will be new occasions to celebrate when you have completed your treatment. Take care

XXX

💚💕

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Dear Kryssy

I swear i did spell your name correctly first time but obviously my iPad thought otherwise !

💚💕

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So sorry to read your news,I hope whatever they treat you with it works, sending you my very best to you xxx

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Sending you a big cwtch and a big pair of knickers - Much love to you Kryssy ❤️❤️❤️

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Thank you but please tell me what a CWTCH is. Xxx

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Sorry to hear your news. The onc sounds great and is fighting for you to find that drug that will hit those tumours. You have a lot of strength and it will keep you going to that 70th celebration and all those big girls knickers are crossing the channel for you now.Take care.xx

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I'm very sorry to hear that the avastin, etc. didn't do the job. Perhaps the topotecan is the one for you! There is actually testing already being done in the US that takes a small piece of tumour and tests it to see which chemo's work the best and the worst on it. It's called chemo sensitivity testing. The process of doing the testing still needs a bit more work to make it more reliable, however, so the mainstream doctors aren't relying on it to choose treatments yet. I've seen ladies in the us use it and some have been happy with the results. I don't believe any insurance covers it though. Something maybe to mention to your oncologist?

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Sorry I'm late in replying. I know you've updated since this, but I just wanted to tell you that it sounds to me like you're ALREADY wearing your "big girl knickers" and quite well! This is tough stuff we're dealing with here and you've had to deal with the loss of Alfie and your birthday is coming up and, to some degree, the fallout of our stupid, f**king president Trump and the endless stream of bad decisions, thoughtless remarks, racist attitudes and bad hair that he spreads like cancer across the globe! You are 100% allowed to NOT suck-it-up every second of every day. In fact, I say there's some value in giving a big "EFF YOU!" to life now and again. Reminds us we're still alive! I for one am VERY glad you are alive, with or without those grown-up panties, and take inspiration from everything you bring to this forum!

XO

...Cyndie

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Hi Kryssy my friend sent me this link, makes very interesting reading. lynparzahcp.com

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Kryssy, were all strong, remember when life gives us lemons we've all made lemonade. Has your Dr given you cysplaten, it's hard to handle, I had it with troxil, then couldn't hang and did carbo and troxil. I'm not familiar with caelyx but read up on it Its basically a very strong antibiotic, the only chemo drug you were on was carbo . I would read up on the new drug, just to make sure it sounds ok to you. Maybe your family can come visit you this time. That would be wonderful. I praying for wonderful results for you. Stay strong! It's just like riding a bike. Maybe you'll travel afterwards. Celebrate then ! We always have options. They'll have two birthdays! ❤❤Liz

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