Hi Redlizzie

I to have ovarian cancer diagnosed in Jan 2009. I had 3 lots of chemo, operation, and another 3 lots of chemo.

The main problems I had with the chemo were gross taste in mouth and nothing tasted like it should, neuropathy of fingers and feet, these got worse with each chemo, but taste improved after about 6 weeks, fingers and feet improved but I still have neuropathy in my left foot (and right but only when I walk!). Hair loss - very slow to grow back and now have corkscrew curls! Tiredness but only realised how bad once I returned to work!

Most of the complications I had with chemo have been rare ones but then I only got diagnosed with ovarian cancer due to a rare autoimmune disease! I developed arterial bloods clots (aortic settling in left Femeral artery) just before my 4th dose, had daily blood thining injections but still developed another clot 5 days after the 6th dose! The onchologist/haematologist aren't sure if its cancer or chemo related and they don't seem to have personally come across it before so please don't worry about it!

I would be interested in hearing about plans for followup when you get that far.

Best of luck

Jackie

Jackie,

I am worried about you as I have not heard anything from you and the other Ladies..xxxx

Hi Everyone.hope your all ok.john and mary first may i say its good to have a man on here who

knows what were goin through keep up the good work.! i to have lost my hair now cudnt believe

how quick it comes out  saw my oncoligist yesterday think she was shocked to see me in a scalf

last time i saw her i had a full head of hair!.had my second chemo today went ok till my canulla came out

blood everywhere! a bit of excitment on the ward! just waiting to see what side affects i have this time.

take care love to you all.xxxx

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

Hi Jackie

I've just reread your post and noticed what you said about your bladder being larger - is that true? does it just expand to fit the space left by everything thats been taken away?

Hope you are well

Cheers

Sue

Hi Jackie & everyone,

I had my bloods taken on Tuesday and got a phone today to say my CA125 has gone up from 32 to 42. I am concerned as I know anything above 33 is worrying in. I have to see GP tomor as I am in Manchester now so the hospital in Wales are faxing my notes up here. My last CA125 was Feb so I don't suppose it has gone up that much. Any takes on it girls...Hope they do a full body scan and not just around that area where the cancer was.

Hope everyone ok xxxx

HI Eileen

CA125 varies for lots of reasons which it why its not diagnostic. If you are feeling well and have no symptoms chances are they will ignore it and continue to monitor it. They don't do all body scan but ct scan chest, abdo and pelvis. Hope this helps and its merely a blip.

I saw oncol on Mon he thinks my rash/itch is an indication that its back again despite my ca125 being low for me, he said if I didn't have the rash he would have been happy. As it stands I have a ct scan next week and then see him again in a few weeks time. Getting bored with it all now and just wish I had normal symptoms! Don't feel like heading off for chemo mumber 3 yet as feel fine or at least I would if i could get some relief from the itch. Have booked a dermatology app but not till the 30th so meantime have increased the steroids (my own idea)  which has helped a bit. Am getting very confused as oncol says something different each time, not remotely consistant, doesn't seem to specialise in ovarian cancer and admits to being no expert in skin condition (which is acceptable!). I accept that my presentation is rare but surely that don't equate to no one with any experience of it???? but to me 6 doses of chemo to get rid of rash seems excessive!!!!!!!!! sorry for rant but feeling confused and helpless, wish I had pain at least thats treatable but an undescribale, soul destroying, itch is beyond them  - cure = ct scan and put up with it till results - great.

Once again, sorry for rant

Hope your all doing well

Best wishes

Jackie xxx

Oh Jackie,

Poor you, and there is me feeling low. Have you tried an alternative for your itch ? I know that goats milk is good for eczema. Something in the nettles. Worth a try.

You never seem to be out of the woods do you, I don't know how you cope, you are true inspiration.

I went to see the GP and they are fantastic, he rang the hospital in Wales and my Dr then rang him back and said he is not overly worried as it hasn't gone up that much and I have no symptoms so has asked them to do another blood test in 6 weeks. I feel much better now. I have an irregular heartbeat that they picked up so had an ECG and have to have another echo scan. All my other bloods were ok and my cholesterol.

I hope Rose, Dot, Sharon, & everyone is ok and Jackie if your feeling low email me please.

Love to you all Eileen. xxxxx

Oh Jackie,

Poor you, and there is me feeling low. Have you tried an alternative for your itch ? I know that goats milk is good for eczema. Something in the nettles. Worth a try.

You never seem to be out of the woods do you, I don't know how you cope, you are true inspiration.

I went to see the GP and they are fantastic, he rang the hospital in Wales and my Dr then rang him back and said he is not overly worried as it hasn't gone up that much and I have no symptoms so has asked them to do another blood test in 6 weeks. I feel much better now. I have an irregular heartbeat that they picked up so had an ECG and have to have another echo scan. All my other bloods were ok and my cholesterol.

I hope Rose, Dot, Sharon, & everyone is ok and Jackie if your feeling low email me please.

Love to you all Eileen. xxxxx