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 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

Hi Jackie & Ladies,

I thought I would pop on as not heard from anyone in ages . I hope your still all ok and had a good summer. Dot, Rose, Sharon, John, and all the rest of you lovely ladies are still fighting..   I am afraid my cancer is back again so will find out were next week when I get my scan results. I am feeling ok but my CA125 has gone up quite a lot.

Jackie hope your still in good spirits and I look forward to hearing from you all.

Love Eileen xxxxxxxxxxxxxx

Hi Eileen, Jackie, Rose and all,

I haven't been able to get access to the site in ages, no idea why, but when I saw your email Eileen I thought I would try again.........and it worked.

Sorry Eileen to hear the cancer is back, and Jackie your concerns too, Rose I hope you are doing ok, I know you were struggling last time we spoke.

There is always the thought it may return in the back of our minds, only way to deal with any of this is being positive, very hard when it feels like it is back to square one!!

I have been struggling with excess fluid, (my legs are like tree trunks lol) I have put on weight and a lot of it is fluid which is slowing me down, I have been told it could be because of the removal of the lymph glands or the chemo or many other things lol, but I have to wait it out as it may right itself.

I had ctscan today and will know how things are with me on Tuesday next, obviously because I have different things going on the gremlins crept in, despite that I am still positive and prepared for anything.

I have just looked at the messages on the rest of the forum and found that dear Rose passed, she was the first person who replied to me on here, she was always there to comfort others and never once complained about what she had been through, I am truly sad to have read this, she helped me soooo much and would always make me laugh when I was down..........we have lost a very special person..........I will miss her so much xxxxxxxxxxxxxxx

My thoughts are with you all....

Love Dot xxxxxxxxxxxx

Hi Eileen, Jackie, Rose and all,

I haven't been able to get access to the site in ages, no idea why, but when I saw your email Eileen I thought I would try again.........and it worked.

Sorry Eileen to hear the cancer is back, and Jackie your concerns too, Rose I hope you are doing ok, I know you were struggling last time we spoke.

There is always the thought it may return in the back of our minds, only way to deal with any of this is being positive, very hard when it feels like it is back to square one!!

I have been struggling with excess fluid, (my legs are like tree trunks lol) I have put on weight and a lot of it is fluid which is slowing me down, I have been told it could be because of the removal of the lymph glands or the chemo or many other things lol, but I have to wait it out as it may right itself.

I had ctscan today and will know how things are with me on Tuesday next, obviously because I have different things going on the gremlins crept in, despite that I am still positive and prepared for anything.

I have just looked at the messages on the rest of the forum and found that dear Rose passed, she was the first person who replied to me on here, she was always there to comfort others and never once complained about what she had been through, I am truly sad to have read this, she helped me soooo much and would always make me laugh when I was down..........we have lost a very special person..........I will miss her so much xxxxxxxxxxxxxxx

My thoughts are with you all....

Love Dot xxxxxxxxxxxx

Hi Dot, John and anyone else out there.

How did you get on with your results Dot ? Hope it is good news for you. Your legs sound painful it must be awful for you xxx

I am worried about Jackie now as nothing since June I think. I am sorry you have had been able to get on the site but glad your back with us now. I am still shocked about Rose ( what a lovely lady and very funny )   It is scary when we lose someone and it is a waiting game wondering if it could be me next but sometimes I think why worry as what will be will be and it is out of our hands now. I hope they have a good bar up there with a few bottles of Red wine.

I get my scan results on Thursday so will let you know, I am not expecting good news this time as I keep getting pains in my groin and it's getting worse so I am thinking lymph nodes.... But will wait and see.

John sorry for babbling on a bit, Mary seems to doing ok thank god. And your managing to get away as well which is good. I am moving next Sat as my house is sold so a lot to do but stops  me thinking about you know what.

I hope we hear from Jackie and Sharon and anyone else who is scared of the feeling of being alone so please get in touch ..... We are getting to be small group now and that is not good....

Keep smiling Dot, John & Mary..... Love Eileen xxxxxxxxxxxx

Hi Eileen and anyone else who !knows me! its been a while hope your all doin ok.

i finished my 2nd course of chemo end of june boy did it knock me off my feet!

had a scan early aug everythin seems ok chemo seemed to have done the trick

fingers crossed. hairs starting to grow now so lets hope its back for xmas!.

im really suffering at the moment with my feet and hands tablets work for a while.

really painfull the joys of chemo.best wishes and lots of love to you all.xxxxxx

Hi Eileen, John Sharon and everyone else

I don't get my results until Tuesday Eileen, I like you... am prepared for whatever comes along, I stay positive but I am a realist and this thing we share is unpredictable. I hope your fears are unfounded but know how you are feeling. I have had the all clear for nine months now and instead of becoming more confident that it has gone, the little old gremlins have crept in lol, darn those little creatures hahaha. Please keep us up to date as soon as you find out!! Hopefully you have somewhere nice to move to, what an upheaval for you when you are not feeling too good.

John.. I am glad Mary is doing well, it is a good idea to have a holiday, I grab each day that comes with gusto and positivety (well, most of the time) lol. We have to keep our lives as normal as possible through all of this and from your posts you and Mary are doing just that.

Sharon it's good to see you back on the forum and all is going well for you, I have very mild problems with my hands and feet and feel for you knowing that yours are very painful, I do hope that yours will improve and the pain relief will be more effective.

Chemo does take its toll, I was told the fluid I am carrying could be many things, two of which are the removal of the lymph glands or chemo, it is a very harsh treatment but without it where would we be!!

Jackie is a concern to me too, it is unlike her not to pop on and let us know how she is doing, hopefully we will hear from her soon!!

My thoughts and prayers go out to all of you and anyone else who reads this post

Much love to all xxxxxxxxx

Hi Sharon,

It is great to see you back online, I always think of everyone on a daily basis. Anyway I apologise to everyone but I do think about you all.... I know that chemo is tough but it keeps us alive. I was thinking about the chemo today and it's like when you have a baby you forget the pain afterwards and with me I forgot about the chemo side affects like pains in your legs, feeling faint ect... god something to look forward too. Have you got neuropathy in your hands and feet ?

I hope your hair is back for Christmas as well and we must try and get together all of us very soon.

Take Care Sharon lots of love and hugs ...Eileen xxxxxxxxxxxxxxx

Hi Dot,

Oh so your like me then playing the waiting game ? I am dreading it and wish they would ring us up with the results as it is sitting in that waiting room ( I call it gods waiting room ha ha ) And waiting to hear I am sorry ? or I am pleased ?  I hope everything is good news for you Dot after what you have been through. I have felt great nearly all this year but have had twinges at the bottom of my stomach where the ovaries use to be and now in my groin. I am sick of looking up all the differnt types of cancers there are as I think I have them all  

Still no word from Jackie I am so worried about her as she is the wise owl who helps us all with her wisdom... I do wish she would get in touch..

Anyway Dot my thoughts are with you on Tuesday and although I am not there with you I will be in my head...

Love and hugs to you and John, Mary and everyone. xxxxxxxxxxxxxx

Hi,

Me agin just been looking at old posts and it is 1 year today since we lost Jayne. I hope her family know we still think about her and anyone we knew who lost there battle...

Love to all of you R.I.P XXXXXXXXXXXX

Thanks Eileen for reminding us, Jayne was a lovely person, my thoughts are with her family today and always.

I was still on the forum reading all the posts when your mail came through, I was thinking of everyone on here (not just our little section).... those I have chatted with and those I follow but never post to, people like Dizzie Shents and Tony to name but a few, their blogs are inspiring...they seem to know the exact words to write to comfort and assure many on here, me included.

I have to mention Rose, miss her lots.

Hugs to all Dot xxxxxxxxxxx

Hello everyone. Thankyou for thinking about my mum. Im still following all of your post. All of you are being so brave and strong! Keep fighting and stay strong.

Take Care Ben.  (Jaynes son) x

Hi everyone its me and i'm fine! there was no activity on the site for so long I stopped checking as often

Dot and Eileen, sorry to hear your both awaiting news, fingers crossed it will be good if not you've been there and done that so you know you can handel it! both of you have had 8-9 months i think which by my standards is very good lol. Mines back but is growing slowly so as yet the muscles are working (sort of!!!) i have refused chemo to sort the itch and will wait till the muscles go. Have creams, anti-histamines and steroids for the itch and its working well till the weather heats up lol, 25 degrees yesterday and today so needless to say its palying up! My last scan showed tumour but not as big as previous, while the temptation is to go for chemo there is a limit to how much the body can take before the bone marrow can't cope so i have decided that the longer i can leave it the better, i will be a year free of chemo in october!

I was terribly sorry so hear about Rose and can't believe how long it is since we lost Jayne though it probably dosen't seems long to Ben.

Glad to hear Mary's doing well and Eileen you sound like you've got back to normal (something I've never achieved). Dot your legs sound most uncomfortable and I not sure there is much that can be done to help

Judy the neuropathy will wear of in time but it does vary, mine was a numbness/tingling type feeling, felt most odd but it when eventually. Let us know how the hairs doing - mines different again this time - not impressed!

Will keep checking back now we're active again!

Take care all

Lots of love

Jackie

Jackie,

Just stopping by to say how lovely it is to see you back on here. I got the email alert to say a message had been left and was pleasantly surprised to see that it was left by you!

You have been missed dear friend

Much Love

Tony xxxxx