Member Since:
2 January 2011
Posts: 6

Hello everyone. This is my first time on chat. I have been reading everyones comments and have found it very helpful to know I am not on my own in this. Diagnosed with Stage III - IV ovarian cancer last August. Didn't know about the IV part until my first visit with the Oncology Doctor. They said I had a suspicious nodule behind my sternum. The surgeon and the local Oncology Docs thought it was ovarian cancer but the Palmy Oncology Doc was still on the fence. They were waiting to see if it reacted to the chemo. It did. I had excellent results from my first three rounds so they did one more before surgery in November then nearly 4 weeks post op I had two more rounds. My post treatment scan showed no signs of trouble spots that had been there previously and my CA125 results were down to 29.  I feel so lucky to have had such good results. Have had a straight talk with my local Oncology Doctor about the odds of it reoccuring and possibly being my demise and am realistic but trying not to let it take over my life. One thing that I wonder if anyone else has found is that after my surgery where they took away all my women bits that were left as well as the "Omentum", I have this real fat upper abdo roll. I have never been skinny but it seems so much bigger than before surgery. I have put on about 10kg since surgery and chemo as well which is kind of understandable I guess as my appetite was all over the place during chemo and I kind of got a bit carried away when it all ended. Has anyone else had this problem postop. Also, one more question. Has anyone else had really sore joints after they finished their treatment. I have noticed my hips knees shoulders and elbows are really painful after i have been resting. Just wondering if chemo can do this. My last treatment was in January. Thanks for any info. 
Chris

Member Since:
20 August 2008
Posts: 16

Member Since:
5 October 2007
Posts: 35

Member Since:
2 January 2011
Posts: 6

Thanks Rachel and Jools.  Hope I didn't sound superficial asking about the weight gain issue.  I am just so happy to be able to gain it again and feel so well.  i think it just came as a bit of a shock as last Feb I underwent a lifestyle change and started the kate Morgan Plan as well as walking again.  By July I had lost 15kg and was feeling the best and fittest I had for years. Just as well as after a 3wk trip to Perth where I was the one walking the 5 flights to our apartment and my husband taking the lift, walking 3km to a Curves centre then 3kms back again and generally walking all over the city, I came home to this.  Must have been someone whispering in my ear that I needed to get fit for the challenge ahead.  I wondered why I was still losing the weight so easily after I had gone back to ordinary food.  I have gone a bit over the top since my chemo ended and I can do something about it myself as I know all the rules.  Am still reasonably fit though just brain lazy.  I was nearly through my menopause when I started chemo but had never experienced the night sweats like I did after my surgery.  The surgeon in Wgtn said I could go on an antidepressant to help with those symptoms but I didn't.  then in March I decided to give it a go. I started on citalopram in March and it has made quite a difference but unfortunately one of the side effects is sweating.  How ironic.  I must say that now I glow instead of sweat and its not too bad.  The benefits of how wonderful and relaxed i feel outweigh the side effects.  Will see how I go. Am handling the joint aches and pains. Am prone to a bit of that anyway so will just keep up the exercise.  I am 57 so to be expected I guess.  And Jools, how soon after your first bout did your OC return, if you don't mind me asking.  I am trying not to get nervous as my first 3 monthly check is due and guess that will get better with time but its kind of in your head.  I totally agree with looking around and there is always someone much worse off than yourself.  I work in A & E as a Night Receptionist/EN so see it all the time, in particular, people who could have prevented alot of it.  And so many brave brave souls.  And yes, I would rather be fat around my middle and still standing. Thank you both for your replies.  I really appreciate your knowledge. Its such a sneaky disease isn't it.  My colleagues have learnt an awful lot since my diagnosis which is a good thing.  I wish you both well for now. Chris

Member Since:
2 January 2011
Posts: 6

Hello again, its a bit quiet. Just thought I would share. I went for my first 3 month check today and CA125 has gone from 29 to 173. Have been having a few things going on that have had me thinking about things but for my bloods to come back like that in a way was a relief as I was beginning to think I had turned into a hypercondriac. So, Doc had already decided to scan me before I told him my symptoms and will see me in a month instead of three. If he sees anything untoward on the scan results he will be in touch.  Thought they might kind of settle for a bit longer as my last round was in January and last CA125s done in March but not to be. Will wait and see before i start worrying.  Does no-one chat on this site. Hope you are all doing ok whereever you are up to with your treatment. Chris.

Member Since:
5 October 2007
Posts: 35

Member Since:
7 July 2011
Posts: 1

Hi my name is Wendy. I have three weeks ago had the news that I have Overian Cancer. Been to Welly and had full hysto as well as "other bits" removed. Waiting for appointment to see specialist to decide chemo treatment next week. Went on to this site to "chat" while family asleep last night, so many questions, and fears but really dont feel comfortable speaking out loud about any of them dont want to scare the family or ask the wrong thing, we are very new to this. I am not great with computors but have a facebook page. Read that most of you chat on facebook? where do I go to access that? Any help would be great. Will check back to this site tomorrow to see if anyone can help. Cheers Wendy

Member Since:
8 November 2008
Posts: 1

Hello Wendy

I am a 6 year survivor of Ovarian Cancer and would be only too happy to answer any questions you may have. NZGCF has a link on their Facebook page to our link  "Turn Your Toes Teal" Ovarian Cancer Awareness New Zealand where we keep you updated on the many developments in the Ovarian Cancer world. If you would like to email me I can be contacted at carolnelson66@xtra.co.nz. Wishing you all the best Wendy - you need to know you are not alone on this

journey.

Carol

Member Since:
2 January 2011
Posts: 6

Hi Wendy, I was diagnosed last August with OC stage III - IV.  Had 4 rounds of chemo then went to Wgtn for the surgery.  You probably had the same surgeon.  I found the ward, surgeon, nursing staff etc. very good and informative.  Nice surroundings to be recovering in.  Came home and had another two rounds which finished in January. At my 3 month check in June my CA125 was up t 173 from 29 in March so am seeing the Oncology Doc next Thursday post scan to see where we head from here. Scan showed no new measurable markers which is good.  My email is christinenodder@gmail.com if you feel a need to have people to chat to.  I never went on chat sites until January and sometimes I wish I hadn't as I start to worry but it is good to see some positive feedback like Carol above. Regards, Chris (Bye the way, my pathology results showed I have Primary Peritoneal which is treated the same as OC).

Member Since:
5 October 2007
Posts: 35

Member Since:
29 April 2009
Posts: 2

Hello, Carol Kennedy here,

I told my story Sept 2010 as Woman of the Month, re my journey with ovarian cancer. 2011 has been a bit of a battle, my CA125 went up last December and I started on carboplatin with good results. This February 2011 I had part of my bowel removed, this went well, though I must say took me a long time to recover my strength. Unfortunately a scan in June showed up one area that needed treatment, I had never been able to have radiation before, so was happy when it became an option (giving me a break from chemo), I had a treatment for 10 days finishing on the day my 1st grandchild was born on the 09 Sept. I knew I was not responding well to the treatment but still battled on, last Monday I was admitted to acute gynae extremely unwell. An urgent scan revealed a recurrence in multiple areas in the abdomen, same old story I start carboplatin next week. I am not writing this feeling sad or sorry, it has just been such a battle over 7 1/2 years, but I still feel confident and am really enjoying my life, taking every day as it comes.

kind regards, Carol

Member Since:
20 August 2008
Posts: 16

Hi Carol,

Great to hear your update, you are really doing so well, 7.5 years! So good to hear you are in good shape emotionally, and focused on enjoying life. Keep fighting the fight. Its so good for others out there to see just how much living can be done and 7.5 years, that's fantastic!

xxx

Member Since:
11 September 2011
Posts: 1

Hi Carol,

Your recent comments help me confirm my own thoughts with positive thinking and determination any thing is possible.

I was diagnosed in April with Advanced Ovarian. Started Chemo in May and had Surgery after a great response to the first three sessions on the 9th of August. My daughter was induced the same day, our second grandson was born 00:05 on the 10th August. I am now 1 session into the final 3 of Carbo and Taxel. I have had no thoughts of succumbing in the next 5 years which was contrary to the original thoughts of the medical team. Now I know it is indeed possible.

Member Since:
2 January 2011
Posts: 6

Hi everyone, haven't been here for a couple of months. So sorry to read of your problems Carol but great to read you are being so positive and getting on with your life.  There really isn't a choice but to is there, otherwise its lie down and ***, well we don't want to do that thats for sure.  Congratulations on your grandchild.  I hope you feel just as wonderful as I do about being a Nana.  I just absolutely love it and now my older daughter in Perth is having her first baby in July.  When I was diagnosed last August my grandson had just turned 2 and that was the first thing and the only thing that made me cry.  I was damned if I was going to submit to some unwelcome predator in my body when I had so much to live for and still do.  I have been doing ok but my CA125s went up to 173 in June after being 29 in March but scan was all clear but they went up to 607 in October but scan again was clear but in the month between scan and seeing Oncologist again they had again risen to 790 so will see him again in January and be rescanned.  Feel ok just sleep alot and have a few vague feelings in abdo but not pain.  At least I feel well monitored and under the best care so will wait and see.  It is like living with a time bomb sometimes but have done my best so far not to let it get to me.  Now, if the sun would just shine for more than a day here in Taranaki my life would be complete.  No sooner do I get the weeding done and the gardens looking nice than we have rain and I have to start all over again.  Never mind, I don't really care as long as I am still here to do it.  Regards everyone, Chris.

Member Since:
29 April 2009
Posts: 2