Hi ladies

I just want to wish you all a Happy and as Healthy a New Year as possible - bring on 2012.

Its good to drop in and see what others are up to - scan and more treatment (fingers crossed!) in January for me.

Best wishes

Sue x

Hello everybody, may I join you and introduce myself?  I opened a new thread on this subject the other day in the "introduce yourself" section, but I really wanted to get onto this site.  I  am 67 yo and live in Essex, UK and have recently been diagnosed as having tumours on both ovaries, plus some areas on the omentum and outer bowel.  However, my hospital MDT  wants to ascertain whether my ovaries are the primary site or secondary to breast ca I had 15 years ago before planning my treatment, so I've just had a biopsy and await results on 22nd Feb.  I found your site about a month ago and was both heartened by all your posts, and at the same time scared - not of the treatment particularly but the outcome.  Some days I feel that I won't get through this, other days I think "No, you won't get me, you (expletive deleted!)"

The last post on your site was 28th Dec, I have been checking, so I hope you are all getting along OK

Best wishes, Hazel. X

Hi Hazel,

Hope you are doing ok post-chemo.

If you need any help with the podcast stuff, let me know. Hopefully if you have a memory card in your phone, a music player and a hands-free headset, it should be possible. You would need to download the podcasts to your PC, then copy the files to your phone using your USB data lead, normally you can just drag and drop the files without installing any special software. Hope I'm not teaching you to suck eggs LOL.

Mary doing well at the moment, so keeping fingers crossed for Portugal on Thursday.

Good luck,

John

x

Hi All

just wanted to wish you good luck with your holiday John, hope you both enjoy it.

Best wishes

Jackie

xxx

Hi Everyone how you all doin im still waiting on a pet scan just

wont to know whats going on.

John. Mary have a lovely holiday well earned id say!

take care all sharon.xxxx

Thanks Jackie & Sharon,

Just off to bed, have to be up 3am! Will let you know how it went when I return.

Best wishes to everyone,

John

x

Have a lovely break, both of you!

Love Hazel xxx

Thanks Hazel,

Not a good start, boarded the plane and was told there will be a 1.5 hour delay due to Portuguese air traffic control action! Hence I have switched my smartphone back on. Due to take off at 8:10 now, not sure why they made us board knowing this. Oh well never mind, not long now.

How did the new anti sickness measures work out in the end?

John

Hi, John and Mary,

Hope you've arrived safely by now and can get messages!

Enjoy yourselves, anyway, hope it's sunny!

New anti-emetics only marginally better, in that nausea just as bad, just no actual vomiting, and whole thing lasted one day less!  Still, guess I have to be grateful for small mercies!

Scan tomorrow, so fingers crossed.

Love, Hazel xxx

Hi everyone have not been in touch for quite a while not since I had my radiotherapy last October.Well I was pleased with the results even though the side affects were worse than I expected.Felt really well for a while once I got over them but by Feb the lymph glands were up in my left groin!! Not charmed with that.Have been ticking over since but have other problems now won't go into them suffice it to say it seems to be spreading downwards.See my oncologist Monday she rang me and said they may do some more radiotherapy and I can try another chemo.Hey ho here we go again!!!.Dont know what I will decide one good thing is she always gives me (and everyone else )the choices in writing so you can go home and think about it and consider side affects etc also every patient has a personal oncology nurse you can ring between appts if you have any queries hope everyone is ok I will keep in touch and let you know how I get on.  Maisie x x x

Hello Maisie,

I haven't met you before, but I wish you good luck with your meeting today with your oncologist!

All the best,

Hazel x

Hi hazel as I expected I have a choice radiotherapy or more chemo have opted for chemo as I can have localised R T later if the chemo doesnt deal with the vaginal cancer .Problem is I have to choose between having just carboplatin on its own or carbo and /taxol.I didn't have the two beforehand kept my hair as I did with calyx.Dont know if it will be worth losing it and having worse side effects. I am trying to find some statistics about results and if the two drug combination is any more successful than the one but I am not having much luck!!!! Thank you for your kind thoughts    Maisie x

Hi hazel as I expected I have a choice radiotherapy or more chemo have opted for chemo as I can have localised R T later if the chemo doesnt deal with the vaginal cancer .Problem is I have to choose between having just carboplatin on its own or carbo and /taxol.I didn't have the two beforehand kept my hair as I did with calyx.Dont know if it will be worth losing it and having worse side effects. I am trying to find some statistics about results and if the two drug combination is any more successful than the one but I am not having much luck!!!! Thank you for your kind thoughts    Maisie x

Hi Maisie,

Welcome back, and sorry to hear of your continued troubles.

I believe that Carbo/Taxol is the first line treatment for ovarian cancer, but not to say it is best for everyone as people may respond better to other treatments. Mary had a Japanese dose-dense regimen of carbo/taxol (first time around) which worked well in trials. Mary got about 8 month out of it but unfortunately had a recurrence in January, so is back on chemo, this time Gem/Carbo. You may want to read my thread about it by clicking this link >>>> http://cancerchat.cancerresearchuk.org/message/28186#28186 and maybe discuss the option with your onc.

Main side effects of Taxol for Mary were hair loss and some neuropathy (some of which has remained in her toes).

Best wishes and good luck,

John

x

Hi All

Nice to hear from you again maisey! sorry it has returned, don't let the hair loss stop you having the combo, the thought really is worse than when the hairs gone. As John said neuropathy is the major problem with the combo but it does go eventually (mine took about a year lol). I'm now on carbo/Doxitol, it has less neuropathic effects but I got 18 months from the last dose so its suits me better. The carbo/Tax combo is recommended by nice as the gold star treatment, you can read all about it by googeling NICE.

Hi John, glad the holiday went well and impressed Mary felt well for all of it, getting up and travelling in the middle of the night would have killed me!

Hi Haze, good luck for Thurs

I had chemo today, first time they used the port which was............ painful lol, its still very swollen so took 4 attempts and a long needle in the end! so much for me not liking needles lol, have doses of carbo/dox reduced to see if they can stop platelets dropping off so much, spoke to the dr who deals with the chemo patients (not consultant) apparently I have 2 hernias not one, both visible on my last ct scan, as my ca125 is dropping he feels I need to get hernias sorted surgically and defer chemo to allow this to happen, bit like the procedure when they do the hysterectomy! While I really want them sorted as they are severely limiting my quality of life I confess to being a tad nervous due to my post surgery blood clots last time! need to make appointment with GP to discuss and get referral. Rash and itching is not responding to chemo yet which is disappointing to say the least . I do read the site when there is a post but find it difficult to respond as can only keep the hernia in while lying flat, not the best position for typing lol.

Take care

Jackie xxx

Hi Jackie,

Yes, Mary doing well at the moment, hope it lasts!

Sounds like you're really uncomfortable, hopefully you can get it all sorted soon without any issues.

Good luck, and best wishes to everyone else.

John

x

Hi everyone,

Just to let you know I am OK at the moment, thinking of you all, and reading all posts with interest.  However, may not be responding much in next few weeks as my partner fell yesterday and fractured his hip, so is now in hosp awaiting op today.  (I think he was a bit jealous that my op is due in the next week or so, depending on CT result, of course.)   Now my family has to rearrange the plans made re my post op care to include Roy's post op care as well, as I won't be able to look after him.

Anyway, love to all for the time being,

Hazel xxx

Oh dear Hazel,

What a disaster! Poor Roy, the things people will do to get a bit of attention eh? Hopefully he will make a quick recovery so that you can help each other a little post ops. Glad you're feeling a bit better, when do you get the scan results?

Mary had clinic and chemo today and the Prof is very pleased with her progress - especially as his experiment with the Gem/Carbo dosages seems to be working out, especially with regard to Mary not yet missing a session. The markers are coming down nicely and he is still happy for her to finish after cycle 5 and go to Florida. I am glad that we did the Portugal trip despite the lack of sunshine, as it has put our minds more at ease about travelling.

Mary is feeling fine now apart from a bit of tiredness, the Prof said she should keep taking the liquid iron to help with her hemoglobin levels, so keeping everything crossed she continues doing well so we can enjoy the big holiday.

Again, I hope everyone else is ok, I understand that you won't feel like posting if you're feeling rough but hope you're feeling better soon.

Best wishes,

John

x

Hello John,

I am so pleased for Mary, and really hoping that she carries on as she is so you can all enjoy your family holiday, wouldn't that be a joy?!

My scan must have been OK, my nurse phoned on Thurs to say that my op has been scheduled for 22/05, but first I have to see the surgeon/consultant at St. Barts in London (where the op will be done) next Fri, 11th, then have pre-assess. on Mon 14th.  So, things seem to be moving in the right direction at the moment, though I'm not looking forward much to the surgery, I must admit!  I've been pain-free for several weeks now and everything will be hurting again after the surgery.  Still, needs must I guess, and at least it's a break from the cursed chemo!

Roy is OK, just a wee bit more 'tongue-tied' than usual (a result of several little strokes in the past, and subsequent epilepsy).  He is more bored than anything else at the moment.

Hope everyone else is doing reasonably well,

Love to all,

Hazel xxx

Hi hazel ,hope all goes well with your op will be thinking about you.Hi to everyone else,I start chemo again tomorrow,decided on carbo on its own to be reviewed after 3 mths if it is not working then I can consider other options.Have been invited to a conference on palliative care needs on Wednesday with all levels of health care professionals, they want to know about my own experiences of care and how I think it could be improved.A bit of a tall order as I think needs vary so much with the individual, but I will give it a go!!!!.     Maisie x x

Hi Hazel,

I hope all goes well with the op, I know it's a tough time for you right now especially with also having Roy's issues to deal with. My lasting memory of Mary's big op is not so much the pain she suffered from the surgery, but more so the pain from the trapped gas. So my advice to you would be to find as many remedies as you can pre-op so that you're prepared. Mary had peppermint capsules and charcoal capsules which I got from a well known health food shop, which did give her some relief. Some people say peppermint tea or cordial is good. I wish I had known about this pre-op as it would have made things a lot easier for her.

Mary quite tired after a busy weekend socialising, it's caught up with her. Booked hire cars for Orlando today, so another step closer.

Take care,

John

Hi Maisie,

Glad you got you're treatment sorted out, hope it works well for you. Good luck with the conference, let us know how it goes.

Best wishes,

John

x

Maisie, thanks for your kind words, and hope all went well today with chemo, and that the carbo does the trick!

Love Hazel xxx