Hello!: I was diagnosed with Stage IV Ovarian cancer... - OvaCare

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Hello!

24 Replies

I was diagnosed with Stage IV Ovarian cancer three week ago - hard first chemo (taxol and carboplatin) 2 weeks ago. Three more rounds of chemo before surgery to remove womb, ovaries and fallopian tubes (as far as I know). Anyone in the same boat or similar?

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24 Replies
meboo profile image
meboo

Not me, but my mum. I don't post very often as it's not my story to tell, but if you click on my username and look at the tab for posts written you will see I replied to someone with a similar story to you and my mum. The long and short of it is that she was diagnosed Jan 14 with v gloomy prognosis & her most recent scan shows no evidence of disease. Take care & good luck x

in reply to meboo

Thanks so much!

in reply to

Hi Meboo, I tried clicking on your name but it says your posts are private or you have none - I've just joined this site, do you think I have not done something correctly?

meboo profile image
meboo in reply to

I think it has changed! Have a look at 'replies' not posts - sorry. I am not that familiar with how this site works!

in reply to meboo

Got it now - thanks!

I am so encouraged by this !

meboo profile image
meboo in reply to

I'm glad it helps. Everybody's story is different, but when Mum was first diagnosed (I have to say by a general surgeon not a gynae & not an oncologist ) we were firmly left with the impression we should accept the news & effectively give up gracefully! Although a week later the gynae oncologist & surgeon confirmed it was not a good diagnosis to have they also both advised treatment. I'm so glad they did, and I looked to here for stories of hope. I certainly got them !

in reply to meboo

That's fantastic to hear ! I had breast cancer in 2001 and return of BC in 2004 and was cancer free 6 years until I got this diagnosis, so when I heard Stage IV I had myself dead and buried, but I am so much more hopeful now. My oncologist is very positive and tells me I am responding very well to the treatment. How is your mum doing now? Is she still having treatment?

meboo profile image
meboo in reply to

two more Avastin to go, chemo finished last Aug. Happy that she is currently well, & content that there will be a plan if/when there is a recurrence. Good luck to you & sorry to hear you have had to rejoin this journey following your previous diagnosis

in reply to meboo

HI meboo. I've seen Avastin crop up on this site, is this a form of chemo or an additional medication?

meboo profile image
meboo in reply to

Have a look on the cancer research or Macmillan site. It has a variety of uses including use for macular degeneration. In ovarian it can be used and added into the final rounds of chemo for first line treatment. It is not a chemo tho it's administered via IV like chemo. The very basic idea is that it prevents the blood supply to tumours. You only qualify for it if your oncologist makes an application to the cancer drugs fund. You only qualify if you have suboptimal debulking and the cancer is not all removed by the first few rounds of chemo and the operation.

in reply to meboo

Thanks Meboo - very interesting .

ForMyTwin profile image
ForMyTwin in reply to

Hi Juliet55,

What a fantastic journey, given that you were diagnosed in '01 with a breast primary. Do you have any diet tips or tricks you've added sice your '01 diagnosis? I'm a big believer in the power of diet, and I'm guessing you eat very clean? If you really don't resrict yourself if anything, that would he great info, too, if you have a moment. You are an inspiration, whatever the journey has been.

Thanks for your time,

ForMyTwin

in reply to ForMyTwin

HI.

I've always been a creature of habit when it comes to my eating ! Weetabix/porridge with seeds and banana for breakfast, brown bread sandwich with cheese lettuce ham etc for lunch and main evening meal, meat/fish pots and veg. I'm lucky I don't have a sweet tooth, so no big deal if I don't have biscuits cake etc. My only exercise has been walking at a very brisk pace, which I have always enjoyed. I also enjoy red wine, a glass or two with my meal a few days a week. I am hoping that my relatively healthy lifestyle will stand to me while I go trough the treatments and surgery later in the coming months. This eating regime seems to work for me, my weight has never been a problem, and I have enjoyed good health up to now, but you know, different strokes for different folks - what suits me might not suit others.

Does this help?

Juliet

ForMyTwin profile image
ForMyTwin in reply to

Oh yes absolutely, and it is as I suspect, seemingly; you have a healthy lifestyle. That is a great encouragement; thanks so much for the reply!!

HI Juliett 55. Welcome to the site. I have had carbo taxol post surgery but it seems tactics change all the time. I was diagnosed officially in 2006, This is a hard chemo but if the anti nausea prescribed isnt helping for for stronger. I was on Moltilium which came right back up at me. Then changed to Valoid and eventually Emmend, I think the constipation is the worst. Try and eat small meals often rather than larger meals. Prunes or Prune Juice, Milled Flaxseed from Aldi or kiwis these all assist the meds you are given for constipation. Well when next treatment is over, you will be half way through. For the operation, I suggest you bring in some nighties for the few post op days, they are easier to manage, maybe some mint tea, a nice book or cd player and some nice handcream. You may experience pins and needless in hands or feet or aches from the chemo. I found best to get up every so often and walk around the kitchen dining room to relieve the stiffness. Do let us know how you are getting on. I am glad you found this site. If you are in the Munster Area, Ovacare are having a coffee morning on July 11th at Clarion Hotel at 11.am, please do come along if you are nearby and up to it. We are a friends bunch and its great to meet others who have the same illness. Its as if we have empathy for each other. Best wishes

in reply to

Hi Suzuki

Thanks for response - I am in Dublin but would like to meet with other people in the same boat. Where in Munster is the Clarion?

in reply to

Hi Juliet55. The Clarion Hotel is in Cork City not so far from the railway or bus station. The address is Lapps Quay and it is across the river from the City Hall. There is a car park at the back if you were driving. There is also a voluntary group in Dublin called SOCK but I dont think they do events like this due to funding. There is usually an Ovacare Patient day in the Autumn possibly Dublin or Galway. This should be advertised later at the end of the summer. if you want any more information the email address is info@ovarcare.com or telephone 021 2427892. It is great to be able to meet with others in the same boat and it is very supportive.

in reply to

Thanks Suzuki - I will contact Ovacare.com and SOCK.

kittie profile image
kittie

Hi Juliet55

Welcome to this wonderful site. I was diagnoised with stage 3c OC in Nov 2012. I had my surgery in Dublin before I started chemo which was also carbo/taxol I had it every week for 18 weeks. Like Suzuki said nighties are the best to bring in with you to wear also a loose sleeve bed jacket with either buttons or zip as for a few days after surgery you will more than likely have drips in your arms. We are due to have a Patients Day Dublin in the Autumn and hopefully you will be able to attend. They are great days and you will meet womens going through all different stages of OC also their are talks given on all aspects of OC. If you want to read private posts and also make your posts private for OC members only what you do is when you come to submitting your post you click the box members only , you should then be able to read meboos posts as well as all the others.Take care and keep us informed of how you are getting on or any other questions you need answered I am sure someone will know the answer. I myself found this wonderful site 2 years ago and even if I am not posting I check in every couple of days. Take care Kittie

in reply to kittie

Thank you so much Kittie _I will definitely go to the Patient's Day in Dublin if I'm not in the middle of surgery or recovering. By the way, when I logged on to the Ovacare site, I was brought to a site called Health Unlocked and this is where I'm replying to posts - there is no option on this reply to click box members only - am I doing something wrong?

kittie profile image
kittie

Hi Juliet55, when you go on the Ovacare Site you will see a line of different names one of which is Support You if you click into this you will see under it online community, click into this and you will be on the page. On the right hand side near the top you will see write a post click into that and you are all set. Also if you want to see past Patient Days if you click into Events and bring it down to patient days you will get them. If I am wrong someone will put you right .Kittie

in reply to kittie

Thanks a million Kittie!

Patriciaa1963 profile image
Patriciaa1963

Julie55, I am in the US, but I had the same diagnosis of stage IV in Feb 2014. I had 4 rounds of chemo, then surgery & 3 more rounds. My last chemo was in July 2014, so coming up on 1 year & still no evidence of disease. The only real issues I had going thru the process was the bone pain a few days after each chemo session. I was told to take Claritin from the day of my chemo to 4-5 days after. I think I just took one everyday until I was done. Do whatever you need to to get thru it.

Patty

in reply to Patriciaa1963

Thanks Patty - your treatment seems to be exactly the same as what has been prescribed for me - chemo and then surgery as opposed to surgery and then chemo. I also had bone pain for the few days after chemo and was told it was a side effect of both chemo and the injection Neulasta for white blood cell that I will receive after each chemo session. It is fantastic to hear that you are disease free almost one year later! Are you on any medication?

Juliet

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