Hi Jackie and Sharon,

Thanks for making me feel so welcome. I know many here are having a hard time with one thing or another, and I sometimes feel a bit bad about banging on about how well Mary is doing. But I just want to share with you what she is doing and how she is feeling and hope that it may be helpful in some way. I just cannot understand why none of you have been offered the new "dose-dense" treatment, but then maybe Mary would have coped well with the standard treatment also, who knows?

Re-hair loss, You are right Jackie, Mary seems less and less concerned about people seeing her hairless, certainly when they come to the house. She hasn't dared to go out uncovered yet but maybe she will in time. Thanks for directing me to the holiday insurance page, I also started a thread on this and got some good replies -

Sounds like you caused a stir on the ward with your canula Sharon, must have been a bit scary! Your hair came out much quicker than Mary's, her's was very gradual and we only shaved the rest off last week, after cycle 3C. I hope you respond well to the chemo and don't suffer too much with side effects.

Best wishes all, have a good weekend,

John

Hi Sharon

Hope you cope as well this time as last time, shouldn't be much different thought the tiredness is accumulative.

Hi John

The dose dense treatment is not 'nice' guidelines and therefore will not be offered by most places. If research and further investigation by NICE conclude it is more effective then it will become standard. You are lucky in that either your consultant keeps up with new treatments and/or is willing to ignore the NICE guidelines. Mine thinks its a bible, have told him if he says 'well the book says' once more I'm gonna hit him lol, so far I've not done anything by the book so why would the book treatment suit me! Having said that my last lot of chemo was carbo/Doxil so I don't think it can be done that way anyway.

Keep well

Jackie

xxx

Hi Jackie,

Yes, Mary is fortunate enough to be under a professor who is one of the country's most pioneering oncologists.He is the Director of Ocology at the hospital and has written books and given seminars around the world. His research and trials are changing the way that other professionals think about treatment for gynaecological cancers.

I have been doing a little bit of searching on the net re "dose dense", and it seems that the treatment has been proved to be more successful in terms of survival than conventional treatment. However it is more toxic, and therefore some patients had to abandon the treatment. (Mary must be very tolerant to it)

NICE say it can take up to 18 months for them to approve drugs and treatments (that's a long time for a cancer patient), but they are also there to ensure that all patients are entitled to the same drugs and treatments (i.e.not a postcode lottery).

Now I don't know about you, but my primary reason for being on this forum is to receive and offer help and advice with others. And while it's nice to have a light hearted chat too, I want Mary to survive this awful disease and I am keeping an open mind to everything, even some of the whacky and off the wall things I have read here.

So I would say go ahead and hit your consultant! preferably over the head with the NICE guidlines! LOL.  And if you want to consider having new treatments, demand that they are discussed and offered if suitable. Mary hates it when I ask too many questions at clinic, but this is her best chance of a cure and I want to make sure that they, and we are doing all we can to get the best result possible.

>off of my soapbox now<

Best wishes,

John

Hi everyone Hi John,

John I've just dug through my 'stuff' given by the hospital and they wrote down a travel insurance website for me. It was set up by someone affected by cancer and aims to give a reasonable quote to cancer patients. Haven't had a look at it yet, but it's www.insurepink. Hope it's useful I will be looking it up for my holiday. Just to ask also if you don't mind? Mary wouldn't be under Prof Kehoe by any chance? Sounds like a similar man that I was referred to!

Anyway hope all is well with everyone, I've just had my bloods done for my Chemo tomorrow. Pain killers on order ready for the pain, Oh god! 

Take Care,

love Sarah x

Hi Sarah,

Thanks for that, insurepink was one of the insurers recomended by someone in my thread   Looking at their site today, it implies that they are for women with breast cancer. Anyway, I took down the number on the site for travel insurance and gave them a ring. The recorded voice offered me only motor or house insurance, I pressed option 1 thinking they may then put me through to the right department. I waited for about 5 minutes as all the operators were busy, then hung up. I figured that I would probably have this delay every time I rang, and I wasn't even sure if I was ringing the right number, so have crossed them off my list

I am sending you a private message re the professor, so look out for it in your inbox.

Good luck with the chemo tomorrow, I hope you have a better time of it this time around. Having read a bit more about "dose-dense", apparently you have more Taxol (not the same as I thought) as standard treatment, but the dose is spread out weekly. That's why it is more toxic, I guess Mary is perhaps more tolerant to it than some.

Best wishes,

John

Morning, I joined this site yesterday, I have battled breast cancer twice and I am now waiting to see a Consultant to seeif I have got ovarian cancer, I went to my GP 's surgery with a water infection and mentioned to this lady doctor who I have never seen before that I had breast cancer in the past, she examined me and said that she wanted me to make an appointment at reception to have my bloods taken and she wanted me to go for a kidney function test and also a scan of my ovaries, I nearly fell off the chair, she is worried that my stomach is swollen, I came home and cheked on the other symptoms associated with ovarian, I do have indegestion, back pain andI want to wee a lot more.  I am in shock, I am forty-eight years old.    The nightmare continues.

Hi Reflexgirl,

Welcome to our chats.... I am sorry to hear about your worries but until you are diagnosed try not to worry ( easier said than done )  but it could be anything. I had ovarian cancer but had none of the symptoms so it could be anything...Fingers crossed....I think talking about it to everyone on here is a great comfort so just keep writing how you are feeling and it does ease the pressures.

Hi everyone else, I had my scan results which are clear and I am pleased about that but I also have other difficulties going on in my life and have had since last year. My partner and me are splitting up as it has all been too much I think. So unfortunately I am moving back to Manchester on Wednesday. I am sad to be leaving West Wales as I love it here and have had the best medical support I could have wished for. But my partner has I think started to get a bit sick of all the hospitals, doctors that we have endured in the last 12 months so I am going... As you all know my house is still up for sale so I am moving back into it until it's sold. I think I will be ok as my friends are all up there and my family but its going to be hard. I know though that with them and all you dear friends I will bounce back .  

                                                               Love Eileen xxxxxxxx

Oh Eileen,

I am so sorry to hear your news,and we never got to meet upbetween our health problems at various timesThe good thing is you will see your lovely grandaughter more often.H ouse sales are beginning to pick up especially now spring is here I am so glad your scan was clear,long may it continue !!!!

I am starting to get a loittle bit more energy,can walk upstairs without stopping now but cant get the weight back.Just under 9 stone instead of 11 which I was at 18 but I did not look like a 70 year old with no muscles then,still,once it gets warmer and we can be out more we will all feel better.

Hope things go well on Wednesday,stay strong lovely girl.

Let us know how you get on.

Rose xxx

Hi Eileen,

I am glad to hear that your scan results are clear, but saddened about your relationship breakdown. Rose has said everything that I would want to say, it is going to be tough for a while and my thoughts will be with you.

Big hugsssss I know you need them.

Rose it is great to know that you are improving!!!   hugssssss.

Hugs Jackie and everyone else....I think about you all every day and wish better health for you all

Dot xxxxxx