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 Jackie,

re chemo - Mary got about 8 months out of the carbo/taxol although they cut out a couple of taxol treatments at the end because of the neuropathy, the Prof said he didn't want to turn her into a cripple (not very pc, are you still aloud to say that?). I think she recovered really well apart from that and our social life was back to normal so most of the chemo must have been burnt off, so I'm surprised by what your onc said but he probably knows more about it than me

The other thing that I swear worked well for Mary last time around was the liquid iron formula, but she hates the stuff and doesn't want to take it this time even though I think it will give her a boost. I think it tastes ok personally but as they say, you can take a horse to water....  BTW she hates ginger too LOL!

Don't get me started on Mary's medical history, they have trouble carrying her file at the hospital LOL, but probably nothing that would effect her having a clinical trial. Let's just say that she has suffered from an extremely rare condition called Maffucci Syndrome since she was about 5, and has had a lot of ops over the years to manage it. I am convinced that it could have been the trigger for her cancer but nobody can confirm that. I may talk to Mary about clinical trials but she may become suspicious that I think her condition is worse than she believes it to be, difficult one.

Glad you're feeling more comfortable, long may it continue!

Best wishes,

John

x

Oh dear, John,

I haven't inadvertently said something rude, have I?   My partner has always said I make him laugh because I'm such an innocent and don't realise that what I'm saying can have other connotations!  (Though I did think as I was writing it that maybe it could be misconstrued, but hoped it wouldn't be!)

Anyway, glad it gave you a laugh!

Happy Pearl Anniversary today to you both - the flowers are a lovely idea, I bet Mary will be really chuffed  , I would be. Hope she will be well enough to go out this evening, but don't let her overdo it again like at the rugby!

I am feeling a bit better this morning, at the moment trying to get through the ginger tea as still a bit queasy - with luck should be OK by this afternoon like last time. Can't say that I like ginger much, either, same as Mary.

Love to both,

Hazel xxx

Hi all

Happy pearl to John n Mary, hope u manage to enjoy the day! See what you mean John re clinical trials, they tend to be arranged in cancer stages if that helps at all, I haven't look recently to see what's available but they recon that people in trails do better than others even if in the placebo group! don't quite get it but if it helps I'd do it!

Glad your beginning to feel better Haze, I don't like Ginger either lol can manage ginger nut biscuits but that's as far as it goes!

Hope we hear from Eileen soon and the long not posting is not due to her ending up in hospital again

take care

Jackie

xxx

Me again!

Had to look up Muffecci syndrome as I'd never heard of it and I couldn't have that! Interestingly found this ' Maffucci syndrome is associated with a higher risk of CNS, pancreatic and ovarian malignancies' so looks like you suspicions could be right (not that it helps)

Jackie

Jackie,

I am worrying about Eileen too.

I looked up the Maffucci Syndrome as well, interesting, but poor Mary!  No wonder John says she's a wonderful woman, with all that to put up with all her life and now this!

Hope you're feeling better - I've just chanced 2 slices of toast and a chicken cup-a-soup.  Went down well, let's hope it stays there!

Love Hazel xxx

Hi Jackie & all,

I have been ok but have had a pulsating like feeling in my chest, neck, and lower back. Anyway I rang my hosp Sat morning and tried to explain what I meant ( it's like an electric shock ) So because I am sweating loads at night the nurse I spoke to said she would have a word with the Dr and ring back. To cut a long story short, I had to go to the local hosp and was their 4 hours. they took bloods and did an ecg but nothing. I have had this before when I when on carbo/taxol but not as bad. I am ok now but has anyone else had it ?

Love as always Eileen xxxx

Hello, Eileen,

Glad you're OK now, you are a poor old sausage aren't you?!   Have not had what you describe, so can't help I'm afraid.  Maybe Jackie will know more?

Take care, hope you manage to get your treatment this week.

Love Hazel xxx

Hi Eileen!

Nice to see you back, afraid I can't help either. The only thing I can think of is the nerves being affect by the chemo but it is only supposed to affect peripheral nerves not internal ones. Did they give you anything for it? How about the nurses on this site? you can phone them and they may know.

Hope it settles soon

Love Jackie xxxx

Hazel and Jackie,

Thank you for your kind words re our aniversary, Mary was really pleased with her flowers although we did not go out as she was still not feeling great, and not much appetite. Although she is feeling a little better yesterday and today, she is still not as good as she has been in past weeks.

Thank you both for taking the time to look up Maffucci's, Mary has spent most of her life explaining it to just about every consultant she has seen, because very few people have heard of it. Because of it's rarity, there is never going to be money pumped in to fuel research so it's just something she has had to live with. It may seem strange to you, but in contrast  it is reasuring that there is so much support in regard to cancer because it is so common and there is a lot of research going on.

Re our Orlando holiday, I have been trying to call at least one travel insurer a day to try and get a quote, but so far only one has indicated that they may insure her provided she stops chemo 2 weeks before the trip, and they receive a satisfactory report from her onc. About 6 have declined cover for her at all because they consider her too high risk. I need to speak to her onc at clinic next week as to whether 5 cycles of chemo may be enough, I do not want her treatment cut short if is detremental to her progress. Also, if the week she's had following the day out in Wembley is an indicator of how she may feel on holiday, then it would not be much of a holiday if she is stuck in the Villa for most of the holiday. So a few things to consider. It is a stark reminder of how serious Mary's condition is when so many insurers refuse to cover her, that's quite hard for me to come to terms with but it's something I have to do.

Funny how you all hate ginger! I have persuaded Mary to go back on the liquid iron formula, it's worth a try to see if it makes a difference. It was her onc that suggested trying it when she was originally diagnosed, he said that some of his patients swear by it. Last time around she responded really well to the carbo/taxol in respect of feeling good after chemo but of course I cannot know for sure if the liquid iron helped, but certainly worth another try.

I have also added "clinical trials" to my notes to ask the onc about next week, I can just ask if he thinks it would be appropriate and what are the risks?

I do hope you and the other ladies are feeling ok, I have been looking out for your posts, I haven't had time to post myself until now.but I try to read everyone's messages.

Best wishes,

John

x

Hi John, Mary, first i wish you belated happy anniversary hope you both had a nice day.

my appointment for the 12th was brought foward to the 5th so ive been to see my oc

and i start my chemo on the 20th this time im having carb/gem dont really know much

about this one only that i wont loose my hair yipee! dont no about anyone else but my

hair is really slow growing back [must be my age!].anyway glad im sorted out now

seems ages since i had my scan.

Eileen hope your feeling better take care,

Dot nice to see you back with us!

Hi Hazel hope alls well with you

and anyone ive missed!

take care wishing you all

HAPPY EASTER.

best wishes sharon xxxxx

Hi John, Mary, first i wish you belated happy anniversary hope you both had a nice day.

my appointment for the 12th was brought foward to the 5th so ive been to see my oc

and i start my chemo on the 20th this time im having carb/gem dont really know much

about this one only that i wont loose my hair yipee! dont no about anyone else but my

hair is really slow growing back [must be my age!].anyway glad im sorted out now

seems ages since i had my scan.

Eileen hope your feeling better take care,

Dot nice to see you back with us!

Hi Hazel hope alls well with you

and anyone ive missed!

take care wishing you all

HAPPY EASTER.

best wishes sharon xxxxx

Hello, Sharon,

Good news, at last you have something sorted!  

You have a good Easter weekend too, Sharon.

Take care,

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