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

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

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 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