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, Sharon,

Good news, at last you have something sorted!  

You have a good Easter weekend too, Sharon.

Take care,

Love Hazel xxx

Hi John,

Hope you're having a nice Easter weekend, and Mary still feeling a little better.  I had a bit of a setback last night, sickness and diarrhoea during the night, but OK now, so hoping it's a one-off.  (Actually, I think I ate too many sweeties before I went to sleep, so serves me right, I suppose!)

While I was looking for Maffucci's Syndrome the other day, I chanced upon another page where the family of a sufferer is trying to set up a website solely for that, and asking for other sufferers/families to contact them.  However, the page was dated Oct.2011, so don't know if still viable.  Anyway, the address is www.maffuccisyndrome.org, don't know if you want to give it a bash, there is a contact facility.

Love to you both, take care,

Hazel xxx

Hi All

Good news Judygirl as last you have a plan, I think Eileen is on carbo/gem, don't think its much different from the patients view point (apart from hair loss, lucky you, very jelous!).

I know its Easter but perhaps you started to soon on the sweeties Haze! hope its all settled now!

John, its really difficult trying to plan stuff especially with regards to going away. Perhaps you need to discuss it with the consultant? I know if in-patients or there relatives have been unable to go on planned holidays the consultant has written a letter allowing them to get the cost back. This might allow you to replan it at a later date.

I went to the GP yesterday as my abdo pain was getting worse, he examined me and found an incisional hernia (bowel coming through a small hole where they stitched me up following operation), he manipulated it back in and hey presto pain gone! Only problem is every time I get up it comes back (not painfully unless left!) so now busy popping it back in lol, gonna speak to surgeon friend and see if they will consider repairing it, personally can't see its any more invasive than the porta cath but they may have other ideas!!!! Had chemo today but they couldn't use porta cath as its was too swollen to feel the 'bung' lol they did manage to find a vein which was something! oh the joys of being awkward

take care all

Jackie xxx

Hi Jackie,

I'm really pleased that you've solved the abdo pain problem - can you not wear some sort of hernia belt to keep pressure applied while you're waiting to see whether surgery is an option, or is that not suitable in this case?

I'm feeling better now, thanks, serves me right for being greedy, but was scared to go out today in case I had to rush to the loo!  I'm keeping the hot cross buns for tomorrow!

There's always something with this chemo, isn't there - you think you've got it all sussed and then what was supposed to help doesn't, like your portacath.  Still, you managed to get it done, that's the main thing - hope it's OK for next time.

Have a good weekend,

Love Hazel xxx

Hi Sharon,

Thank you for your wishes and I am so pleased that you got your treatment sorted at last. Mary is on Gem/Carbo too and will be half way through on the 19th, just before you start. Good luck, I hope you respond well.

Hi Hazel,

Yes, Mary feeling much better now, thank goodness it was her week off of chemo, enjoying the weekend so far. The website that you saw was actually put up by my eldest son (who has his own web design business) back in 2010. That was before Mary got her initial cancer diagnosis so our priorities have somewhat changed since then. The contact page goes directly to me and I have explained Mary's situation to anyone that has made contact, only about eight in two years!  Hope you're still feeling ok, go easy on the sweeties!

Hi Jackie,

Glad to hear you have found some relief from your abdo pain, hopefully something can be easily done to remedy it properly. Yes, I have quite a lot to discuss with Mary's onc next week so it should be an interesting consultation.

Not sure if it's the liquid iron making Mary feel much better or whether she would have done anyway, the real test will be just after the next two chemos.

Hope everyone else is doing ok and enjoying their easter weekend.

Best wishes,

John

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

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