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 Sharon,

I managed to get my 4th chemo but felt awful yesterday, not too bad today and have been able to lie on settee, something I can't do when I feel rough. I was on Gem/ Carbo and found it a drag as it's 2 bags one week, then one bag, then free week so I felt I was never away. With this Rotterdam which is Cistplatine /Etoposide even though it is every week for 3 cycles then a 2 week break and another 3 cycles it seems to be going quickly.

On another note Jackie & Hazel I have found out what was causing the spasm thing I was getting. Apparently with Taxol which I was on 2 years ago and had a few spells of the spasm, and Cistplaten also can cause nerve damage so if it continues I have to have an MRI scan and a lumber punch... So fingers crossed that I don't need one of them. I think as well because I had the 5 cycles of Gem/ Carbo it is very soon to be blasted with yet more chemicles. I have been on chemo now since Oct with only a few weeks break..

I hope everyone else is doing ok . I have not read all posts yet so need to do catch up..

Love always Eileen . xxxxx

Morning, John,

Well, it's a small world, isn't it - that website being yours?!  What a shame it hasn't elicited more interest, even though your priorities have changed now, understandably.

I am still OK thanks, hope Mary is too, and that you all enjoy Easter.

Love, Hazel xxx

Hi, Eileen,

Happy Easter!

How are you today?  Even better than yesterday, I hope?  Glad they've told you why you've been having the spasms - they keep some of these extreme  side effects very quiet, only tell us if and when necessary.  Not sure whether that's a good or bad thing!

Anyway, I hope you don't need either test - I've never had a lumbar puncture, but I HATED the MRI, horrible, noisy, rattly, uncomfortable b..... thing.  Like some mediaeval torture machine! That's something that definitely needs some technical work doing on it!  (That's my moan for the day over.)

Love, Hazel xxx

Hi, Everyone,

Happy Easter,and hope you're all feeling reasonably well!

Love, Hazel xxx

Hi Eileen,

Glad you're feeling a little better, I do hope you don't have to have a lumbar puncture, that doesn't sound very nice at all .  I also hope you continue to feel better as you have had an awful time of it and deserve a bit of normality.

Hi Hazel,

Mary still feeling good, just a little tired. We went out for a meal with some friends last night and had a really nice evening (first grown up portion she's had for a week!), then went to her Mum and Dad for lunch today. The Maffucci website idea was borne out of frustration as there is not a great deal of info out there, so my son said "ok Dad, let's create our own website, that's what I do". It seemed like a good idea at the time, but because this disease is so rare it was always going to take a long time to find enough participants to make it work. And of course we have a lot more to think about now.

I think Mary is coming to terms with the fact that we may not be able to go to Florida in June, even though I hadn't discussed it with her before, she was talking about her doubts with our friends last night. That has taken a lot of pressure off of me because I wasn't looking forward to having that conversation with her. We'll see what the onc has to say about it on Thursday.

Best wishes to everyone,

John

x

Hello, Laura, 

Hope you are doing OK - only one more to go after today, am I right?  Hope so!

Keep going, thinking if you!

Love Hazel xxx

Hi Ladies,

Hope all is well. Just wanted to wish those having chemo tomorrow (Thursday) the best of luck. I can't remember who is having what and when now, perhaps we need a spreadsheet LOL.

Mary has clinic tomorrow and hopefully starts cycle 3 of her Gem/Carbo all being well. She has been feeling good for a week now so hopefully should be ok. I have a few questions for the Prof tomorrow so hoping the answers will be favourable - will let you know how it goes.

Best wishes,

John

x

Hi, John,

Good luck to Mary for today, hope all goes well. x

I'm beginning to lose track as well, but to everyone having anything done over the next few days, good luck, and to anyone recovering, I wish you better!

I'm thinking of you all - my turn next week!

Lots of love to all,

Hazel xxx

Hi Ladies,

A good day at the hospital today.

Hi Jackie,

I remember you making this point about a year ago when Mary was on a Japanese regimen of Carbo/Taxol. This time around, her consultant has prescribed her GemCarbo but has split the dosage equally for week A and B. This confuses the hell out of the chemo nurses as they always think that she is on week A and needs to go to clinic. Yes, her consultant certainly seems to do his own thing and I asked him about this at clinic.

His rationelle was that many ladies cannot cope with the recommended dosage of chemo for week A, and so many times their neutrophils are too low to receive treatment on week B. By adjusting the dosage so that it is split over week A and B, you are less likely to miss a treatment session so that has to be a better schedule.

You cannot really argue with that, he is the top oncologist at the hospital and surely the NICE guidelines are eventually moulded by the best oncologists. We have faith in what he is doing, of course he cannot promise a cure but he will do his best to ensure her the best quality and quantity of life that he possibly can.

I also remember you saying that your onc plays it by the book and you felt like hitting him over the head with the book! LOL - well perhaps you should!

It's very quiet here at the moment, I hope everyone is ok.

Best wishes,

John

Hi Jackie,

I remember you making this point about a year ago when Mary was on a Japanese regimen of Carbo/Taxol. This time around, her consultant has prescribed her GemCarbo but has split the dosage equally for week A and B. This confuses the hell out of the chemo nurses as they always think that she is on week A and needs to go to clinic. Yes, her consultant certainly seems to do his own thing and I asked him about this at clinic.

His rationelle was that many ladies cannot cope with the recommended dosage of chemo for week A, and so many times their neutrophils are too low to receive treatment on week B. By adjusting the dosage so that it is split over week A and B, you are less likely to miss a treatment session so that has to be a better schedule.

You cannot really argue with that, he is the top oncologist at the hospital and surely the NICE guidelines are eventually moulded by the best oncologists. We have faith in what he is doing, of course he cannot promise a cure but he will do his best to ensure her the best quality and quantity of life that he possibly can.

I also remember you saying that your onc plays it by the book and you felt like hitting him over the head with the book! LOL - well perhaps you should!

It's very quiet here at the moment, I hope everyone is ok.

Best wishes,

John

Hi All

Glad to hear all your news John it all sounds very positive. Fingers crossed the anti sickness will work this time, it will make the  treatments so much more tolerable. I'm glad the aims of treatment have now 'out in the open', it makes life much easier as you can now discuss things without worrying about what you are saying.

I just wish that the NICE guidelines filtered through quicker esp as my cons it not of the free thinking variety!!! on the other hand I can't complain as what he's done has worked well for me so far.

My sister is visiting at the mo (which is nice) and unfortunately my hernia problem is making using the computer difficult, so if i'm not around much don't worry, i'm actually fine!

Hope things continue to do well for you both

Jackie xxx