Anyone else with epithelial stage 4 ovarian cancer that is platinum resistant out there?

[carrie]

Am on six month trial with seracatinib after having had chemo and surgery - stage 3c cancer had spread after first line treatment ended last June. (By November had spread to lymph nodes.)

[sarah1963]

Hi Carrie

I'm platinum resistant stage 4. I don't know whether its epithelial (I know that's pathetic not to know). Mine is in the abdomen and liver but not lymph nodes.

How are you getting on with the trial? Are you coping with the side effects?I am trialling a different drug. I won't go into detail as I have blogged about it.

Hope you are OK.

Love Sarah

[carrie in reply to sarah1963]

Ok right now Sarah. Am having 5th chemo tomorrow. I have it weekly for 6 weeks with 2 week gaps over a 6 month period. Havent had news yet on my CA125 but am worried since I know chemo cannot go on in perpetuity. I havent had side effects apart from tiredness and a few mouth ulcers, guess I have been lucky. Must look at your blog. Thanks for your reply. Love, Carrie

[sarah1963 in reply to carrie]

Dear Carrie

I hope your chemo has gone well today - just getting through it is a triumph on your part especially every week. I have done that and I found it very hard. About the perpetuity question - do you want the good news or the bad news? It can gone on for a long time! My experience is that if we can take it, they'll keep giving it to us. I am on a daily chemo tablet and because its working - Allelulla! I might be on it indefinitely. Don't look too far ahead because we simply don't know. Today's battle is enough for now.

Take Care Love Sarah

[carrie in reply to sarah1963]

Thank you, Sarah. I feel ok today after treatment, only very tired. Youir comments are very encouraging and while at the Royal Marsden I have met other people who have been on chemo almost non-stop (like me) since diagnosis. One person for 2 years, and I have not reached that mark yet! Love, Carrie

[sarah1963 in reply to carrie]

I'm at the RM quite regularly - I'm there on Monday. One day our paths might cross. I am being looked after by Dr George who in turn works for Prof Kaye.

Love Sarah

[BusyLizzie in reply to sarah1963]

Hi Twin,

After your first line treatment did you have a re-occurrence within 6 months or was it later on you developed the resistance?

Love Lizzie

X

[sarah1963 in reply to BusyLizzie]

Twin

These oncologists can't have it all ways. Mine said that just because I responded well to one drug that has no bearing on how I will respond to a completely different drug. So just because you are platinum resistant DOES NOT mean that you won't respond to other drugs. Sounding down beat is just the way they are. I have lost count of the times I have had pick myself up off rock bottom after a gloomy consultation and create my own hope rather than rely on the oncologist to do it for me. And I have been right to hope. No I'm not cured but I am still alive with the capacity to enjoy life. So PLEASE PLEASE don't work on the worst case scenario. You are a fit young woman with lots of treatment options available to you and lots of time to do enjoyable things and visit family.

In another to your question - my CA125 started to rise approx 8 months after I began carbo/taxol. But I didn't start of Caelyx for another 8 months after that.

Sorry I sound in a bossy mood this morning but its important!!

Lots of love Sarah

[BusyLizzie in reply to sarah1963]

Oooo, I like a bossy twin!

I am not as down as I may sound. As you say, I am healthy at the moment, and I have an exciting day tomorrow of a PET scan At least my husband is taking the day off, so the nice thing I will have his company all day, and we usually have a laugh together no matter what. I am not in a rush to start new treatment either. I think we know that using up the bullets too quickly is not to our advantage. I know there is no cure, but as you say, I will settle for being alive for along as poss as long as I can keep relatively active.

I hope your side effects from the trial are under control for you? I know you said in another post about being hard to get into the Christmas spirit wekk a) we just had a snow shower here in Worcestershire b) the spirit of Christmas has been visiting us in the shape of Christmas china figures which have been appearing on my door step over the last few days. I think a neighbour is having some fun with us!

Love Lizzie

X

[sarah1963 in reply to BusyLizzie]

You will keep active and isn't it wonderful to have a husband whose company you can enjoy even in a hospital waiting room. We're very lucky.

You do sound positive - sorry I sounded bossy. I am just so anxious that you don't worry too much.

My side effects continue - the oncologist might drop the dose again when I see them on Monday but of course I worry that I should be tougher and put up with it if the treatment is actually working.

I went to the hairdressers yesterday - a big effort and they confirmed that my hair is growing out white at the roots (instead of dark brown) just like it would if I dyed my hair. A small price to pay - I'll just have to dye it from now one. But just another subtle way of making you feel less like yourself.

Good luck tomorrow. I will be interested to hear what a PET scan involves. OOh snow showers over Worcestershire - it sounds lovely and I like the sound of the mysterious china figures. Things like that really cheer you up. Someone unexpected has made me a Christmas cake which has really touched me. There is definitely more good than bad.

Love Twin

[BusyLizzie in reply to sarah1963]

We are lucky indeed. We are looking forward to a Christmas Soiree on Saturday evening by one of neighbours. 7 of us are really good friends and so we like a get together. The girls amongst us have been meeting regularly (like a WI without the knitting and Jerusalem hymns) but it will be nice to get the boys together as well. So I need to be good or by the end of the evening my wig will be wonky and my false eyelashes will be on my cheeks!

Will let you know what the PET scan involves. I know I am not allowed to eat after midnight (sounds like a gremlin) until the scan, but should drink water to keep hydrated. Also no sternuous exercise 24 hours before, so i have not been able to do my daily cross channel swim today

My hair is very weird now, least said the better. As you say...a small price. I just wear hats (baker boy today) and a wig if I am going out for something other than shopping or walking or hospital appointments. Enjoy your Christmas Cake! I know about one of my Christmas presents from my sister-in-law. She has bought us a voucher to dine at Raymond Blanc's Manoir aux Quat' Saisons, near Oxford. I hope I can squeeze it in before chemo round 2 makes me paranoid about what I am allowed to eat!

Love Lizzie

X

[Hidden in reply to sarah1963]

Dear all - I just wanted to reitterate Sarah's comment that oncologists can be downbeat and gloomy. I've had exactly the same experience. One had such a long face I said I suppose that's bad news is it and she said 'yes'. It wasn't bad news at all in the end. I've responded better than anyone thought to my chemotherapy and I'm still alive and enjoy life to the full.

We must keep ourselves cheerful ladies - and thanks Sarah for your comment 'if we can keep taking the chemo they'll keep giving it to us'. It makes me determined to keep as fit as I can so I can keep on till they discover something that will help us permanently.

Loads of love and hugs to you all. xxx Annie

[sarah1963 in reply to Hidden]

Hello Annie

Here's to exceeding expectations and new careers. Selling cables sounds pretty good. My husband is a thatcher and I have no intention of going up the ladder with him!

I hope you have a lot of good cheer this Christmas.

Love Sarah

[BusyLizzie in reply to sarah1963]

My husband and I (that sounds very royal) both work in IT, and in fact we used to work together which is how we met! I say I work in IT, but obviously not for the last 6 months....

[BusyLizzie]

Hi Carrie,

My story I have also blogged about and is on my profile....I was stage 3c in May, but after de-baulking and 4 rounds of carbo/taxol my CA125 was back on the rise. I finished 6th round on 28th October and am going for a PET scan on Thursday. In October my CT and MRI scans looked OK intially, but when discussed at the MDT they think the MRI may show something around diaphragm. We are waiting for the result of the PET scan to show where to go next.

My surgeon was very downbeat when I saw him on Thursday last week because I am platinum resistant. I expect to hear from my oncologist early January when they have results and discussed the scan, but scheduled appointment is 22/1/2012.

Like you Carrie, I am worried that platinum resistant first round chemo does not leave a lot of places to go. I guess the stuff out there available (avistan and caelyx not readily available) is not very effective for people who were initially platinum resistant which is why they are pushing us the way of trials. I'll let you know what my next treatment is.

Today I have convinced myself it has spread to my lungs.

Still fucntioning OK, but madly trying to live for the day - seeing my Mum, husband's Mum, day trips to Cotswolds and Aberystwyth. Walks around Worcester and the Wyre Forest - that is just since Thursday morning!

My oncologist said I would still be around in November 2012, so not completely panicking yet.

Love Lizzie

X

[Hidden]

If your oncologist thinks you will still be aroud in Nov 2012 he obviously has something in mind. I am now on my 5th lot of drugs, (with various recations on the way down!) and on triosulphate and Gemcitabin, which are actually drugs for other cancers (one of them the lung, but I can't remember which!), and I'm glad to say I have now have a good result with my CA125 down to 19 this week!

As you say live for the day, and do whatever you feel like doing. Unfortunatley my husband still works when we are at home, and I don't feel confident enough to go out on my own, so have to rely on friends, many of whom are still working as well. We do have a motorhome for when we need to get away, which helps, (and gets him away from the office!).

hope it all goes well for you.

Love n hugs

Viv

[BusyLizzie in reply to Hidden]

Hi Viv,

My husband works too, he just had a few days off. I am confident to go out on my own, but except for seeing my Mum once a week, I am happy to rest up and walk locally when he is at work. As of next year I will do 3 x 0.5 days a week at work. I think that will be good for me mentally. I can work remotely whenever I want of those 0.5 days.

I am not sure why my oncologist said what he said now, but it has given me some hope so I won't push too far unless it turns to dust in my hands

Love Lizzie

X

[Hidden in reply to BusyLizzie]

Congratulations on getting back to work, even if it is only part time. When I feel fit enough to drive I go to my local cancer support group for the coffee mornings, and treatments (lovely), and we have started a local Ovacome support group at St Richards hospital for anyone who needs us. (Take note if you live near to Chichester). It is the walking that I am worried about on my own, so I've also just re-joined the local GP referral scheme at the local gym so when I come back from the cruise I will try and go there for my excercise. At least I know somebody will pick me up if I fall down, (or catch me before I go as has happened!). Next year will be different if I'm not on Chemo, and the effects wear off............ I hope!!

[BusyLizzie in reply to Hidden]

Hi Viv,

My day trips led me to falling over on Monday. We were on the shore line at Aberystwth and my husband was using our little point and shoot camera to film a little movie of us. We got carried away and did not notice a wave come shooting over our feet. My body moved quickly, but my legs did not. Resulting in me falling over in the sea LOL. Luckily not too wet and there was some padding where I fell so no cuts or bruises.

Love Lizzie

X

[Hidden]

Hi to all of you with working hubbies. Mine does too - so the plan is for me to take retirement early and help him with his business. He sells cables. It won't be quite the same as working at Cardiff University. Ooo err - hope it works out OK!

xxx

[BusyLizzie in reply to Hidden]

Hi Annie,

May be not the same - but it will be a new chapter. One thing I find really wonderful is doing new things probably because revisiting old things I remember my innocence about what was in store for me. I am sure you will have some fun and it will be a new challenge. Good luck - will you the Debbie McGee to his Paul Daniels?

Love Lizzie

X

[Hidden]

ha ha - you're nearly right. One of the strange things I did as a young woman was to be a magician's lovely assistant which meant I got 'cut in half' several times a week. Perhaps we should swap our oncologists for a magician? xxxxx Big hugs.