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

Thanks, Jackie - I wish you the same.  Sorry you aren't too good at the mo, I  have bad abdo pains too but mine are worse if I sit about for too long so I guess you ARE just being awkward!

It's good to know you still have a sense of humour -  what are you like getting your poor consultant into trouble?!

Love Hazel xxx

Hi

Just wanted to drop in and say hello to everyone again, and welcome to the new ladies, so sorry to hear that most of you, and me, are on the journey once again. Seems strange to be thankful for something (chemo!) that makes us feel so bad as we hope it will all be worth it in the end.

I've had one round of my 3rd cycle of chemo - gem/carbo this time - went for the second lot today but they wouldn't give it as neutraphylls too low. Has that happened to anyone else? They are going to reduce my dose too which I'm not happy about.

SO nice to have people to share this with that do understand.

Best wishes to all

Sue x

Hi Dot,

That's great news! Many of the ladies are having a tough time at the moment so it gives us all hope when we hear good news, enjoy the next three months and hopefully much more

Jackie, thanks for the info on abdo tap, I will discuss it with the onc team also at next clinic.

Eileen, I do hope you're feeling better soon, I am so thankful that you started this thread, I bet you never imagined it would attract so many nice people and be as popular as it is. I know that Jackie was the first to respond to you and has helped you a lot on your journey.

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News: Mary had a call from the hospital bed manager today, and they have arranged for her to have her port fitted on 23rd March, hopefully that will go well and she can avoid a lot of distress from attempted canulas.

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Hi Sue,

Welcome back, so sorry to hear that you're also are back on the journey again. Mary is on Gem/Carbo too but her onc is prescribing both doses spread equally across the 2 weeks (he always has to do things differently) , only good news is you don't lose your hair!  She had her chemo postponed once last time around because of low neutrophils, yes it is a bit frustrating if you're making good progress but they have to put your safety first. I agree that it is good to be among people who understand and can compare notes and support  each other.

Good luck and best wishes to everyone,

John

Hi Sue

Eileen is the expert on low blood counts! My dose was reduced last time round and it didn't seem to work any less, your body has got to cope with it and if it takes a smaller dose to do that then I suppose its for the better. I got 16 months out of my last lot despite the reduced dose so try not to worry!

Dot, great news!!! no more colds for the next 3 months please lol

Haze, yes I do give him a hard time but its his own fault!!!!

Take care all

Jackie xxx

Hello, Sue,

Thanks for your welcome.

Isn't this site brilliant - you only have to mention a worry and everyone is there trying to reassure you!  I hope Jackie's and John's responses have helped put your mind at rest, and that your treatment is soon under way again, it's so disappointing when things get delayed, I know.

Love, Hazel xxx 

Thanks for the reassurance Jackie. So your dose was reduced too? I know what you mean about your body having to cope with it but I think I'd prefer to soldier on if it was for the greater good, if you know what I mean. I was wondering whether to challenge the doctor about this next week when I go and I quite like the idea of having equal doses over both weeks like Mary does rather than more the first week so I might mention that too.

I dream of getting 16 months - only got 8 months first time, then 6 months so feeling pretty despondent about the whole thing at the moment. Just hope this different chemo works better. Delaying it has really thrown me, and I thought I was coping well - guess we're all nearer to the edge than we realise, or care to admit!

Thanks for the messages of support and love and hugs to you all.

Sue x

Thanks John and it's a lovely picture of you and your wife - you both look so happy!

Thanks Hazel, hope you are keeping well and battling thru

Hi all

Sue, I think that's the point! there is no point soldering on if it means you have to keep delaying each treatment, which is worse: a) chemo reduces bloods and you have to delay treatment or b) chemo reduced and you get treatment on regular basis? don't know the answer but my reduced dose worked well for me and I think I'm starting at the reduced dose again this time. Ask you onc along with your question regarding spreading the dose more frequently. Know what you mean about it not keeping you going, I only got 6-8months the first time so was delighted when I went 14 months this time (however have been symptomatic for 12 months lol), think I left it a bit late this time as have never been so symptomatic and CA125 up 200 in 6 weeks higher now than at any other time!

Just heard from onc department and have cancellation for tom at 10.30! sorry for the other person but wow do I feel I need it!!!

am worried that I'm expecting to much from this chemo! itch, skin and stomach sorted within a week????? too much to ask???

Hope Eileen is recovering and everyone else is coping!

Take care

Love jackie xxx

Hi everyone and thanks for all the good wishes.

Hi Sue,

Jackie pointed out that Eileen was the one to chat too as she has always had problems with her neutraphylls, she is going through a hard time at the moment, she does seem to struggle with her treatments and I am sure once she is up to it she will respond.

I was put on weekly chemo as I had lots of side effects, I was told it would be better with a lower dosage which would be better for me, but I don't think it is the same thing as you are going through.

I just want to say that I was given a bad prognosis, a year to live as I had an aggressive form of cancer, it spread from ovaries to liver and lungs......yet here I am, proof that things can rapidly change, my CA125 is down to 10 and hopefully it will continue that way. I am always aware that it can come back at any time but force myself to look at the positive side and take things day by day. It is sad for me to watch everyone struggle, this is no easy thing to deal with.

I always worry that I might say the wrong thing and cause distress to someone, it is so hard knowing what to say to everyone going down this difficult road, I just want to say that all of you are in my thoughts and prayers

Love to all Dot xxxxxxxxx

Hi everyone and thanks for all the good wishes.

Hi Sue,

Jackie pointed out that Eileen was the one to chat too as she has always had problems with her neutraphylls, she is going through a hard time at the moment, she does seem to struggle with her treatments and I am sure once she is up to it she will respond.

I was put on weekly chemo as I had lots of side effects, I was told it would be better with a lower dosage which would be better for me, but I don't think it is the same thing as you are going through.

I just want to say that I was given a bad prognosis, a year to live as I had an aggressive form of cancer, it spread from ovaries to liver and lungs......yet here I am, proof that things can rapidly change, my CA125 is down to 10 and hopefully it will continue that way. I am always aware that it can come back at any time but force myself to look at the positive side and take things day by day. It is sad for me to watch everyone struggle, this is no easy thing to deal with.

I always worry that I might say the wrong thing and cause distress to someone, it is so hard knowing what to say to everyone going down this difficult road, I just want to say that all of you are in my thoughts and prayers

Love to all Dot xxxxxxxxx

Hi, Dot, don't worry, I'm sure you never upset anyone, we all know the score even if we don't always say it.  We all love you, you can see that from how over the moon we all were at your good news.  xxx

Laura, glad you've got through no.3 and are feeling OK now.

I have just had no.1 today, and it's been a VERY long day as I had an allergic reaction almost immediately to the Taxol - face burning, dizzy and chest tightening, so had to stop it for a while and check with oncologist.  She advised slowing drip right down for an hour and gradually increasing speed, which worked perfectly, thank goodness.  Of course this meant it all took much longer than anticipated.

Hope it's better next time but will bring it up at clinic a few days prior to that.  xxx

Everyone else, Mary today, Jackie, Eileen, Sue, Sharon, hope you are all managing to weather whatever's being thrown at you!

Lots of love to all,

Hazel xxx

Hazel,

so glad you got through it ok in the end, yes Mary had similar problems as you can see above, left the hospital at 6pm!

John

Hi John,

Thanks. Love to Mary and good luck today, hope all goes well and you can make it to the ball on Sat!

As you"ll see from my timeline I can't sleep, feeling nauseous all night, and eventually sick so am waiting for morning so I can start domperidone!  What a life, eh?

Love, Hazel xxx

Hi all

First dose done without problems lol, Haze I had the same with one dose of taxinol they ran it at half speed thereafter and I was fine.

John hope Mary begins to have more good days than bad, I know its hard to plan anything but at the same time its important to have things to look forward to, bit of a catch 22! There are many different types of anti sickness drugs and if one is not working its worth trying another, if I remember right maxalon (short name for it!) helps the stomach to empty and this in turn stops you feeling sick.

Dot, we love your news and always will, its the old if you can do it so can we syndrome!

Haze why are you waiting to take domperidone? I take mine (even if not needed) 4 times a day for 3 days, I normally start it 4 to 5 hours after they give the sickness injection or when I get home if that's later. They work better at stopping sickness developing than when you are already feeling sick, though to be fair sickness it not something I normally suffer from (could be the tablets or just me lol).

Hang in there everyone it can only get better!

Jackie

xx

Hi Hazel,

I did notice the time of your posts, sorry to hear you are feeling so awful, I hope you're a bit better by now.

Mary had another good day today (that's 2 in a row!!), just a bit tired. We actually went out for a curry tonight, although she didn't eat much it was good for her to have an evening out, first time for weeks. Hopefully she'll be good again tomorrow and we will get to go to the Ball, party frock at the ready so keep your fingers crossed for us.

Jackie, Glad to hear you got of to a good start, that's promising. Thanks for the advice on anti-sickness tabs. Apart from the day after chemo, Mary had only been taking her Doms when she felt nauseous so like Hazel perhaps we are doing it wrong too.

Best wishes to everyone, especially those who are feeling awful at the moment.

John

Hi Everyone, hope your all ok.Eileen hope your feeling better now big  hugs to you.

John and Mary fingers crossed you feel better tomorrow [you shall go to the ball!]

Dot nice to hear from you its been a while. Hazel, Jackie, and anyone ive missed

have a nice weekend lots of love sharon xxxxxx

Hi, Jackie,

I did know that I had to take the domperidone regardless of whether I felt sick or not as prevention is easier than cure, but they told me to start them next day so thought it best to do as I was told.  However, I"ll do as you suggest next time and take a couple when I get home!

Hope you're OK yourself.

Love, Hazel xxx

Hello, John,

Thanks for your concern.  I wasn't too bad yesterday after all, managed a bit of shopping, but just felt very tired all afternoon and evening, so had an early night and slept quite well for me!  Feel reasonable this morning, so far!

I hope Mary stays well enough to wear her posh frock this evening and that you both have a lovely time!

Love to you both,

Hazel xxx

Hi all

Haze as an ex nurse I don't always get the same advice as they assume I already know! however injection or tab, any anti sickness will only last a max of 6 hours, so can see no good reason for the advice you were given and as I've come to no harm doing it 'my' way think it would be worth trying! I take mine pre breakfast, lunch, supper and bed (usually about 1/2 hour before each) I only take one unless I'm feeling a tad nauseous then I take 2, I usually stop them on day 3 or at least only take them as and when i feel a need lol I wonder if you advice got mixed up with the steroids cos you usually don't take them till the day after chemo?

John i absolutly hate being sick or worse feeling sick so do everything in my power to prevent it! it works for me as descibed above and I really hope this can help others, feeling sick drags you down and makes everything harder to deal with. So, is Mary well today for the ball, have my fingers crossed and hope to hear it was a great time!

Managed to do a little more today (not a lot so far but hey) before the gut ache kicked in, its not as bad as pre chemo but am taking it easy at the mo and will try again once it goes. Thinking it must be the extra steroids 'shrinking' the tumours as probably a bit early for the chemo! as I finish them today, tom should be interesting lol

Take care

Jackie xx

Thank you all for your kind words. Mary is feeling quite good again today so she shall go to the ball! Seems the chemo is working for her at last.

My daughter and her boyfriend are staying at the hotel and said she can rest in their room if she needs to. We will see how it goes, even if we have dinner then come home it will be nice. Will let you know how we get on.

Best wishes,

John