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Caelyx

I have just read the letter my oncologist has sent to my gp. As caelyx has not worked

she states that my options of further treatment are limited. What does this mean, anyone else had caelyx and it's not worked ? What treatment are you on now?

Bobbie

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Hi Bobbie

I start my 4th line treatment next week. So far I have had 1st line Taxol/carbo 2nd Line Carbo/Gem/Avastin 3rd Line carbo Etopiside. 4th line will be Topotecan twice monthly.

My Onc told me there were plenty of options and treatments if this doesn't work. I haven't had Calyx yet.

Wishing you all the best

Trish

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Thank you, I am feeling really anxious now as I thought I had lots of options left x

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If you feel really anxious you should contact your Oncology Team or your Liaison Nurse and question them. You don't mention what you have had already. Please try not to worry, ask them you will feel a lot better when you get an answer.

xx

Trish

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Dear Bobalu

Sometimes things written in letters seem very stark and scary. I've always been told there are plenty of options and when chemotherapy ceases to work well there is the option of joining a clinical trial of a new treatment if patients fit the criteria.

I've just finished my third line of chemotherapy. The most important thing to me is that I have felt pretty well each time I've had treatment and I'm not too keen on going down the path of looking at treatments that might give me a few extra months but risk destroying the quality of my life. I'm now resistant to platinum therapies and the oncologist has quoted two different trials I could join if I wished, and the possibility of other trials at another centre.

I had carboplatin single agent for first line, carboplatin and gemcitibane with Avastin for 2nd line and carboplatin and taxol for third line. Options for a fourth so far are to repeat taxol on a weekly basis with a drug to stimulate double-chain breaks in the DNA which causes cell death, or Caelyx and another drug which is a Kinase inhibitor that changes enzyme activity and suppresses cell growth and division. I haven't yet decided whether I want to pursue either of these options given they've only been tried out on comatose mice before they are being tried out on me but it's better than having no choices.

I guess if your options are limited isn't the same as having no options. It's just that you and I have less options than we started out with. I think we might well be in the same boat. My view is the same as Trish's, to keep talking to your team in order that you understand all the options, the risks and the opportunities, and that you make the decisions that are right for you.

I'm sending you a big hug. Don't forget a few options isn't no options, and whilst everything doctors tell us is based on statistics, none of us are a statistic.

Sending lots of love. xx Annie

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NICE has just reversed its decision on Olaparib. With luck, you might be eligible. Best, Vx

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Thanks V, I read an article this morning and it seems to be for BRCA positive women which is the right decision as they haven't completed the trials on BRAC Wild-Types which is my diagnosis. I'll be keeping my eye on new developments. xx Annie

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I've been reading some research papers and the differences between chemo effectiveness depending on the tumour type. My recurrence is clear cell pure where initial diagnosis was mixed cells which had a better prognosis. The standard carbo/taxol is apparently not as good for me, so have written to the doctor in charge of the research in 2013 that identified this to find out if his stage 3 trial was a success.

There are so many different combinations, and changing all the time. I'm sure they will identify something to help.

Good luck

LA xx

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Thank you Lily-Ann I know you have been through the mill yourself, hope you are feeling a bit better. I am not so panicky now, I think if they haven't discussed something with you they shouldn't put it in your letter to the gp as its obvious you will read it. If it's so relevant she should have told me when mentioning further treatment which she is discussing with me on Monday . I wonder if some of them are human . Best wishes to you Bobbie

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Hi Bobbie

I had 3 cycles of Caelyx earlier this year and after a midterm scan showed that disease was progressing I switched to Topotecan. I finished 6 cycles of this in Aug and currently disease is stable. I've had 6 x Carbo/Tax/Avastin, 6x Carbo/Gem 3x Caelyx 6x Topotecan and my Onc has told me their are 'lots' of treatment options open to me for the future. I've also recently seen another Onc (re: trials) and he told me the same.

Hope it helps

L4W

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LW4 yes that really helps. Thank you.

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LW4 when you had the topecan did you have capsules ?

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Hi Bobbie

No, I had intravenous (via PICC line) treatment days 1-5 then a break and start again day 22 (3 week cycle). If you have this regime I def recommend having a line in, although they can leave the cannula in for a couple of days so you only have two a week it does take a toll on the old veins. The treatment only took 30 mins each time but I did find driving every day quite exhausting and a week of steroid injections didn't help. I know we all react differently but for me the SE's weren't too bad, no nausea (yeaaay) but learned to increase my fluid intake to counteract the constipation, day 7 I would 'crash and burn' but I think this was the steroids wearing off and then I had 2 fairly good weeks. I had to pace myself but could do most things I wanted too.

L4W

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Hello. I've been on weekly Taxol for my 4th line and it did work for the first few months. Next will be Topetecan. There are still quite a few out there to try! Lovis x

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Lovis thank you for replying, it does help.

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I don't have much to add as carboplatin seems to work for me (so far) though I reacted to the last infusion so only had half of it. But I wanted to say I was surprised that there's something in the letter that hasn't been discussed with you. As others have said you need to discuss your options now with the onclology team. Do you take someone with you who can ask questions ? my partner's a list person and she helps by adding the queries that I forget. There's so much to ask about and to tell them about in a short time frame. i often feel pressured to be quick because I know there are people waiting to come in after me, just when I need to take my time and ask all I need to.

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Thanks Lesley yes I am a going to do a list, my husband also loves a list. I try not to be too mindful of the others waiting as I usually have a long wait myself. I know we don't always understand the dr jargon but that is a simple lay mans statement "her options are limited because she have been on caelyx " which was never mentioned to us just that we would discuss further treatment in four weeks time.once I had posted on here I calmed down and can wait until Monday now for the answer. Best wishes with your treatment. Bobbie

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ooh gosh ...I thought Caelyx was going to be my last option too , and I got in a state ; and the Onc. assured me we would find me something ......But dreadful rashes as a reaction to caelyx / then reintroduction of Carboplatin didn't work either ( body rejected it ) ...so went on Cisplatin ( again )weekly in April and stopped in August ....the buggers are all dormant now , with the exception of a growing area !!

Trials being considered as outlined by others , and generally speaking the Oncologists don 't give up on us that easily !! By the end of this year , I'll be on , I know not what ...but hopefully , something !

Go with a notebook , names of drugs you've not had ...lots of questions and try not to let the anxiety get to you , but engage in the process . Easy to say when your heart is in your throat , as we all know ...

You dont say what " type " you've got , and anyway the biology of the thing can change ( mine has " morphed " ...whilst the research keeps advancing ; and I do mean , advance .

When I started all this in 2011, the situation was horribly bleak ....ways of giving drugs as combinations / or in smaller amount over longer periods and so on ; we are indeed all different .

Keep as strong as you can x

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Thank you for your info, glad you are in a good position just now. The strange thing is I have had no side effects from Caelyx which is,another mystery . Not long until I find out the thinking behind the statement. So nice to hear things have improved from 2011. I was diagnosed early last year , 21 months ago with 3c serous clear cell.

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