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Dolina 25, Female Perth wa Australia: Share

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Trying to find some cause, some type of common ground between all of us with GCT's!!

Replied Oct 19

PTSD (post traumatic stress disorder)
1 Reply

Started this discussion. Last reply by CAROL Oct 22.

Trying to find some cause, some type of common ground between all of us with GCT's!!

Replied Oct 17

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GCT Patient Support

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Hi welcome to Dolina's page of progress against giant cell tumor!!

Is going to call my GP for xray results! Oct 22

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Is going to call my GP for xray results!

October 22

pain pain go away.. come again another day (more like never!!) haha..

October 19

Dolina added a discussion

PTSD (post traumatic stress disorder)

Hi All, I hope this finds you well.. I just wanted to know if any of you are going through this? I have been going through this since my first diagnoses but it dosent happen all the time only if something reminds me of my time in hospital etc it...

October 19

Dolina updated their profile

October 17

Hi Everyone!! havent been on here for awhile hope you are all well xo

October 17

Dolina added a blog post

I am doing great!!!

July 6

Comment Wall (7 comments)

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At 5:23pm on October 21, 2009, CAROL said…: hello dolina I am doing great. I am back to myself. It took about 9 months or so to get off of a crutch. I was begining to think I would be limited for life. I feel so blessed. My Dr says the longer I cqn make it to 2 yrs my chance of recurrence will go down . Then I will not have to return so often. I really appreciate My Dr. He really saved my life because of my iniatial misdiagnosis of osteosarcoma I was set up for chemo & thaen sx & more chemo Life is good Hop you are doing good also carol

At 10:37pm on October 8, 2009, Christina Alamirie said…: It is hormonal. My doctors told me I couldn't have children anymore because the hormones will make it grow out of control. I had a son in 2003 and all my problems started right after that. I have since had 'Essure', my tubes are now permanately blocked, no more kids. Oh how upset my husband and I get wishing we could have more! Good Luck and wishing you well with everything!

At 1:53pm on February 10, 2009, Kim Savoie Armstrong said…: Just wanted to let you know that I have been thinking about you all day. Hang in there and just know that you have many, many people by your side in spirit.

At 11:58pm on December 15, 2008, CAROL said…: HI DOLINA, I HOPE YOU CAN STAY BUSY & HOPEUL ; A POSITVE ATITUDE I HARD TO MAINTAIN BUT ESENTIAL TO OUR WELL BEING I HAVE HAD A HARD TIME THESE LAST 2 WEEKS. I NOW THINK I WAS DEALING WITH ALL THE EMOTIONS OF MY SX IN JULY 08 . I WAS SO BUSY BEING HAPPY I DID NOT HAVE OSTEOSARCOMA (MY MISDIAGNOSIS) THAT I DID NOT DEAL WITH THE OTHER EMOTIONS OF ANGER , FEAR, GRIEF ETC. THESE ARE ALL NORMAL. I AM MORE HOPEFUL & POSTIVE THIS WK. I GO IN & OUT OF THIS. MY PAIN IN MY LEFT KNEE I BETTER. I AM WORKING 1 DAY A WEEK. kEEP THE FAITH DO SOMETHING FUN TODAY!!!! TRY TO LIVE ONE DAY AT A TIME. WAITING IS THE HARDEST FOR ME. YOU ARE IN MY PRAYERS CAROL 62

At 3:25pm on December 15, 2008, lottie said…: hey dolina.. how are you? I am also having loadsa pain with a maybe recurence in my tibia.. so maybe having total knee and rods inserted.. its so scary and painful i know :( wishing u all the best thou huni xx

At 5:34pm on December 1, 2008, CAROL said…: I hope all will be well for you. I had sx of gct in l eft distal femur in july 2008.. 4 months post op. I am improving each day I still use 1 crutch to walk a long way . I suppose my age which is 62 makes healing take longer. I am back at work 1 day a week. carol 62 gct

At 7:49pm on November 24, 2008, Heather said…: Hi, Dolina! I'm so glad you found our site. I got your message about Carolyn's reply, and I'm looking in to it. Thanks for letting me know, and I especially thank you for joining us. I hope you're able to find some good information!

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Profile Information

About Me:: Hi my name is dolina!! and im married to the most wonderful man ajay we have 2 daughters azlina 5 and azuria 1 .. pretty much like every other woman in their 20s i enjoy fashion cars and now trying to find a cure for GCT, I am so glad i found this group to have others in your situation is very comforting to know because only they can know what you are going through.. i am mostly on facebook so please add me on there!

How do GCTs affect you?: GCT patient

Location of primary tumor:: Right femur

Date of diagnosis of primary tumor:: December 2004

Treatment of primary tumor:: I fractured my right femur back in dec 2004 diagnosed with GCT the size of a tennis ball had that removed and followed by a bi polar hip replacement.

Facility treated at for primary tumor:: Royal Perth Hospital, shenton park

Would you recommend this facility and it's Doctors to another GCT patient?: yes

Recurrence? If so, where?: Greater Trochanter

Date of recurrence:: 5 november 2008

Treatment of recurrence:: Going in for surgery the 10th of febuary 2009 to remove the tumor and to have the bone filled with bone cement.

Facility treated at for recurrence:: Royal Perth Hospital, shenton park

Would you recommend this facility and it's Doctors to other GCT patients?: Yes, apparently my surgeon is the best in WA

Metastasis? If so, where?: I guess so, in the soft tissue above the bone tumor site

Date of metastasis discovery:: early january

Treatment of metastasis:: Surgery

Facility treated at for metastasis:: Royal Perth Hospital, Shenton park

Would you recommend this facility and it's Doctors to a fellow GCT patient?: Yes

Tumor free?: Hopefully YES!

Current GCT Status:: No reoccurance from xray scans, had an xray 16/10 because of pain, waiting for results..

Dolina's Blog

I am doing great!!!

Hi Everyone!!!

I hope everyone is doing relativly well!!

well its been nearly 5 months since surgery and i am doing really well.. no pain!!! well not as bad as it was :-) for my last checkup went to the joint replacement assesment clinic she did some measurements and that 2cm difference in my leg length still.. but i dont feel any different..surgeon happy! i was only on crutches for 1 month..well it was a little hard with a baby and child to look after..

ummm.. go back to see my surgeon in au… Continue

Posted on July 6, 2009 at 12:06am — 2 Comments

Back from surgery

Hi everyone!!

I have returned with my tumor removed!! I just wanted to wish those who are having surgery the best of luck..
and those on drug trials i hope theres some good news for you..

well i ended up having an acetabulem placed in my hip because the hip replacement wore my bony acetablulem down to cartilaige, Also they found another tumor and some cysts which are currently still being tested. i have to go back next week for follow up results. I am on crutches following hip precautions (to… Continue

Posted on February 18, 2009 at 2:27am — 3 Comments

Leaving now!! FINALLY!!!

Well my family and i are packing and are making our way 4 hours away from home to have my surgery done next tuesday the 10th of february 2009!!! After having my surgery date changed 3 times I am getting nervous yet excited because it is finally here and i have been suffering alot of pain the past few weeks.. I am hoping that i wont be on crutches for too long because my husband only has 4 weeks leave and it would be really hard to take care of 2 kids on crutches!!!!

Goodbye for now,

Best wishe… Continue

Posted on February 4, 2009 at 5:00am — 3 Comments

Hair is falling out

well for quite awhile my hair has been falling out and i have only noticed that there is alot falling out just recently, I pull out handfulls in the shower and wake up with it all over my bed.

It is really starting to get at me because i can feel that my hair is alot thinner (having asian hair its usually thick).
I dont know what to do i try not to cry but at this point i am starting to break and its really hitting me why is this happening??? , my faith in "everything happens for a reason" is s… Continue

Posted on January 14, 2009 at 2:59pm — 1 Comment

Surgery date changed

Well my surgery date has changed to the 10 of febuary, I was pretty disappointed as i am having pain in my hip and its not getting any better day by day.

Thanks to you all who sent well wishes for me!! so kind of you :-)

I went to see my gp today and he had a look at my thigh because there is a lump on the surface of my skin, he then rung my surgeon and explained this was a nodule or something i dont know what that is?

So hopefully i will get a call tommorow for a sooner sugery date!!

well i… Continue

Posted on January 8, 2009 at 1:29am — 3 Comments

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