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

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,

Just got back from the Algarve, the weather wasn't great but it was a nice break and we were forunate to be given one of the best hotel rooms with a panoramic sea view! Mary was absolutely fine while we were away, thank goodness! Starting cycle 4 after clinic on Thursday.

Sorry to hear there's not much improvement with the nausea - I guess the wrist bands didn't help either? How did the scan go? (I am guessing it was a CT) Did you get the results?

Hope all the other ladies are ok, still no word

Best wishes,

John

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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

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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

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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

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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 ,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 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

Hi John chemo went ok ,not feeling brilliant if I am honest ,very fatigued much worse than I expected but I will cope !!!.The conference went well, got a really complimentary letter and flowers from them ,quite unexpected but very nice .Regards to Mary hope she continues to do well.   May x

Hi hazel I am surviving ,! Good you are keeping positive my thoughts are with you and your husband Take care .  May x

Hi Everyone,

Just checking in to see how you're all doing - it has gone very quiet on this thread.

Mary has her last chemo next Thursday (5 cycles) as her onc wants her to be off of treatment 3 weeks before we go to Orlando. She will be re-assessed when we return, blood test and CT scan, and he is looking to see if there may be any suitable clinical trials to offer. Apart from being tired, Mary is feeling ok and we are off to another wedding tomorrow (3rd this month).

May - I hope that your chemo is still going well and you're coping better now, so glad that you got some positive feedback from the conference.

Hazel - I hope things are ok with you and your partner, I was quite concerned about your last post.

Best wishes to everyone,

John x

Hello everyone-I have read all your posts and would like to join in-I have gained a lot of comfort from reading about other people's experiences and you all seem like a really nice group of people.

My name is Anne and I was diagnosed with stage3c ovarian cancer(one ovary and lymph node involved) in January 2012.I had debulking surgery in February2012 and have just had 5th chemotherapy dose-last one due on July4th.I have also got a 2cm cancerous tumour to kidney and am seeing the urology consultant about that this week.I am aged56 and have been married for 26 years and have a son aged 25 and a daughter who is 13 so as you can imagine I have found my diagnosis and prognosis very distressing at times.

I have found chemotherapy quite a struggle (I hate needles as well!)but am focusing on being able to spend quality time with my family once it's over and have booked 2 weeks in Spain at the end of August which I am really looking forward to.My friends and family have been very supportive and I am trying to live as normal a life as possible but sometimes I feel very frightened and lonely .As I have said I have found following similar experiences helpful and would also be more than happy to help other people through what can be very tough times.

Hi Anne,

Welcome to the forum and of course you are most welcome to join in. At the moment it has gone very quiet on this thread and I suspect some of the ladies are having a difficult time right now.

I am glad that reading some of the posts has helped you in some way, it is a difficult thing to come to terms with. Strangely enough though it seems more difficult for our friends and family to come to terms with and they sometimes do not know what to do or say. As for Mary, she has just told everyone to treat her as normal.

Mary stopped her chemo 4 weeks ago so that she would be able to go on our family holiday to Orlando - we leave on Thursday, so I will not be around on the forum either for a couple of weeks. Mary is feeling well at the moment, so hopefully the holiday will do her the world of good. It is important to have things to look forward to, so good for you booking a Spanish holiday.

Mary will have a blood test and CT scan when we return, then we will discuss what happens next. May I ask what chemo you have been on?

Best wishes,

John

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Hi everyone how all doing i avnt been on here for a while.a big welcome to Anne

therse always someone to have a chat to or a moan! best site ever.well ill fill

you in with whats happening with me i was ment to have chemo again a month

ago then the day before i get a call from hospital to see my consultant change

of plan no chemo im having surgery to remove a lymph node.so im just waiting

tfor that letter to be dropped through my letter box!.even though im very nervous

anyone had this op?.just wont to get over with.

Hi john, Mary glad things are ok with you

have a wonderfull holiday.

Big Hugs to everyone

take care. sharonxxxxxx

Hi John and Sharon and everyone,

John I am on 6 sessions of Carboplatin/Paclitaxel given at three weekly intervals-I was incredibly ill after 1st dose but although I still have severe nausea,fatigue etc it's nothing like the first time-as you can see from the time I am writing this sleep-or lack of it-is a big problem for me and has been since diagnosis.I am sure you and Mary are getting really excited about your holiday-I hope you have a fantastic time and enjoy every second of it-there is nothing better than a complete escape and change of scenery -problems get forgotten for a while.Your travel insurance must have cost a fortune!!I am using EU card in Spain and insurance which doesn't cover cancer due to ridiculous costs.

Sharon I had a lymph node removed during my initial debulking surgery so am not sure about what the operation entails when done separately but do let me know how you get on.

The hardest thing for me is the effect this has had on my daughter -we are very close indeed-and her unhappiness fills me with a terrible sadness.At the moment she is quite involved with preparations for Race for Life which gives her a focus.I am close to my son as well but he is at university so is not at home all the time.

I avoid hospital cancer support groups and try to live as normal a life as possible but it is lovely to feel part of this group where you all seem to be lovely,kind,supportive people.

Love to everyone

Anne X

Hi Anne,

Mary had Carbo/Taxol first time around and responded very well to it - only issue was the Taxol left her with a lot of neuropathy in her toes, so she couldn't have it this time. Instead she had Gem/Carbo, but again she has responded well with very little side effects, she seems to be surprisingly tolerant of chemo fortunately.

Re Travel Insurance, yes it can be very expensive, we were quoted a minimum of £1000 and most companies wouldn't insure at all. Mary's consultant advised her to stop her treatment 3 weeks before travelling and to take out a policy excluding pre-existing conditions. The thing is, it's the chemo rather than the cancer that can make you suddenly acutely ill, so you have to do your own risk analysis. We cannot afford to keep paying thousands of pounds in travel insurance, so we have to make an assessment that she feels well enough to travel. Fortunately, she is feeling very well right now so we feel the risk is very small.

Her consultant also advised her to have her treatment around her life, not her life around her treatment, and he is very flexible with this. So do look forward to your holidays, they are very good for you.

Best wishes,

John

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