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 Helen

Some of the ladies here have had weekly chemo which seemed to work well for them, I'm surprised they haven't altered the chemo as NICE guidelines to recommend changing if you get less than 6 months 'remission', on the other hand I suppose it makes sense to try weekly while adding the Avastin and keep the others for use later. Some seem to follow the guidelines while others do there own thing!

The 'prognosis' conversation sounds reasonably to me, I think your consultant has handled it well. 3 years and 3 lots of chemo later my body is not telling me I've had enough!

Take care

Jackie xxx

Hi John

I can't remember if you can take both anti sickness at the same time, they may work in different ways so I would suggest checking with the dr or nurse. Ondanstetron is known as the most powerful anti sickness med (if used to be exclusive for cancer patients because of the cost!) however like everything else take what works, so if you find the metclopromide works better ot a combo works better then sltick with it, its all trial and error i'm afraid!

So far the dex seems to be standard for all, the anti sickness seems to vary i get sent home with domperidone but then I've never had a problem with feeling sick so it hasn't needed to be changed! I think haze gets domperidone as well, so think Mary's ond and max are due to the problems she was having with sickness.

Hopefully she will feel better soon, though to be fair I think a long day out on saturday would have left any of us washed out the following day! I think thats one of the hardest things to accept, doing what we once could do without thinking now needs to have recovery time built in (diff makes you feel old )  you need to remember that chemo is accumalitive as well, so Mary will feel more and more tired and it can take several months after chemo ends before energy returns. Not saying you shouldn't get out and about, cos its brill that u do, just saying to expect a tired day after it!

Hope Mary has a good day today

Jackie xxx

Hi samkevin

So sorry to hear of your loss and especially the sad circumstances which have left you finding it difficult to come to terms with. The other have all given you some useful advice and the only thing I can think to add is the ethical side of it. Obviously we don't know your circumstances but information can be very difficult if you are not the next of kin. Hospital (in UK) are almost obsessive now with confidentiality, the patient gets told everything and with there permission others can be told. This does lead to the type of difficulties you seem to have experienced. At other times the next of kin is involved, it is then up to them what they pass on and again you have the old Chinese whispers getting in.

In direct response to your questions (my opinion only) 1) yes unless the patient has clearly indicated that do not want to know

2) doctor to patient preferably with relatives present for support 3) uk have protocols

I hope you manage to resolve these issues quickly so you can comes to terms with the loss of your sister and get to the point where you recover your good memories of her.

Wishing you the best

Jackie xx

Sorry for multi posting but memory playing up so had to do each individually!

Hi Jackie,

Thanks for your input re meds, like you say it's trial and error, maybe nothing will work and it just has to take it's course. You're right about the day out leaving her washed out. Mary felt nauseous all night and was completely exhausted today and ate nothing. She has her week off chemo next week so hopefully she'll have another run of feeling good before cycle 3 starts. She never felt this bad last time around with Carbo/Taxol so maybe it's the Gem that's dragging her down.

I was hoping to get her out to the Algarve for 2 or 3 nights mid April, but I think I will have to book flights the day before so we'll know if she feels well enough. Our planned family trip to Orlando in June is not looking good if she has to go the full 6 cycles of chemo, as you say the accumalative effect. I have found a company who will insure her provided she stops her treatment 2 weeks before we go, and they have a full medical questionaire completed by her onc, they have told me that the minimum premium would be £1000! So a lot to consider there. Mary developed neutropenic sepsis towards the end of her last chemo and I thought it was going to kill her, so there's no way I would take her to the USA without medical cover. The family have said they would not go unless we went too, because that was the whole point of the holiday - we all thought she was cured when we booked the flights!

Maybe tomorrow will be better, I hope everyone else is coping ok.

Best wishes,

John

x

edit: - PS, I meant to ask, has anyone tried self-acupressure for nausea? I was reading up about it this morning and it looks very interesting. If you Google "acupressure nausea" the most common pressure point seems to be on the back of the wrist. You can even buy travel sickness wristbands that work by pressing this pressure point (p6). Look at the reviews on amazon.

Message was edited by: JohnMillbrook

Hi Jackie,

Sorry to say the domperidone trick didn't work - I have been really bad since Sat morning, feeling and being sick, loads of bile.  Can't eat and more importantly, can't drink.  Am thinking of phoning chemo unit this morn to see if they think I should have IV fluids.  What do you reckon?

Hope you are still reasonably OK yourself?

Love Hazel xxx

Hello, SamKevin,

I am so sorry to hear about your sister.  My thoughts are with you and your family.

As John and Jackie have said, protocol will differ if you are in US, so I would advise that as well as letting us know how you get on you also try to find a similar chat site in the US where the info will be more suitable for you.  I'm pretty sure there will be some, I stumbled across one myself a few weeks ago.

Good luck, love Hazel x

Hi, John,

So sorry for Mary - at the moment I'm feeling the same, and it's b..... awful!  Hope we BOTH feel better soon!

Love Hazel xxx

Hi, Sharon,

Sorry to hear about your results and the awful, wasted day.  Please do as Jackie says and get in touch with PALS, this is not good enough.  I just wish some of these people would have the humanity to put themselves in their patient's position!

Good luck,

Love Hazel xxx

Hi John and Haze

beginning to look like I'm just lucky with the nausea and vomiting, which is a good job because i hate feeling sick, to the point I have avoided alcohol since being sick at the age of 17!!! John, get the bracelet, my view is its non invasive than therefore can do no harm and if it works great.

Haze do phone the team, you need to drink and they may be able to control it by different meds like they've tried with Mary.

John, the insurance, my god they do take us for a ride don't they! I find one of the main problems with this cancer thing is not being able to plan ahead. I think its something we are all really used to doing and it all adds to the uncertainty when we can't. Gem will certainly cause different effects to the carbo/tax, but I suspect that Mary still has this on board (its not that long she she had the carbo/tax is it?) so the gem is hitting her already battered system. I had my second lot of chemo 8 months after the first and found it far harder going than the first or so far the 3rd.

I was suprised when after 1 dose of carbo/dox my platelets fell, I had been chemo free for 18 months so didn't understand why they had dropped as previously it had only happened the once and not to the point where chemo was delayed. The onc said that chemo was accumulative and length of time between treatments made no difference

John have you looked at getting Mary on any of the trials? you have never mentioned any previous medical history so if the cancer is her 'only' disease process she may be suitable, my blood clots and location exclude me! not a lot of trial activity in the backwaters of Norfolk! if you think it might be suitable there are links on this site which tell you the trials available and what they are looking at.

Ginger is also supposed to be good for nausea, but Haze and Mary you both NEED to drink or you will feel even worse.

Stomach feels better today (still don't feel quite right but mild pain not severe) though I have to confess I'm reluctant to move around much in case it comes back! that's bad as I'm not normally a physiological type person but its so crippling when I get it I just can't help worrying it will come back.

Hope today is a better day for you all

Love Jackie xxx

Thanks, Jackie, you are so helpful!   I have forced myself to get up today and had a slice of dry toast and cup of tea - drunk VERY slowly.  So far it has stayed down,  but still don't feel quite out of the woods yet!

May try John's travel sickness bands when I can get out again.

Hope your stomach pains don't get too bad again!

Love, Hazel xxx

Thanks, Jackie, you are so helpful!   I have forced myself to get up today and had a slice of dry toast and cup of tea - drunk VERY slowly.  So far it has stayed down,  but still don't feel quite out of the woods yet!

May try John's travel sickness bands when I can get out again.

Hope your stomach pains don't get too bad again!

Love, Hazel xxx

Hazel, try this - http://m.wikihow.com/Stop-Nausea-With-Acupressure

Thanks, John,

I did see your suggestion and had a look, and as I said to Jackie I will get the wrist bands when I get going again, and try them next time.  Haven't tried it with finger pressure yet, with my luck I'd probably press the wrong place and make something else go wrong!

Thanks again,

Love Hazel xxx

LOL@Hazel! ...and my work colleagues were saying "gonna share the joke then John?"

Mary was a little better today but still feels really washed out. I hope she is better tomorrow as it is our Pearl annniversary, wow! where did those 30 years go?? I have bought her a big bouquet of flowers and hid them in the garage, I'll leave them in the lounge before I go off to work in the morning. We'll go out to a nice restaurant if she's feeling up to it, otherwise we'll do whatever she wants.

I hope you feel better tomorrow too Hazel, thanks for cheering me up just when I needed it.

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

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