GCT of the sacrum
Keeping track of problems and progress when this difficult location is involved
Giant Cell Tumor Network
The Giant Cell Tumor Network is a place for people who have or know someone who has giant cell tumors to connect and share information.
Members
Photos
Groups
-
GCT Australia
2 members
-
GCT'ers in the Denosumab…
25 members
-
GCT of the sacrum
11 members
-
GCT Canada
7 members
-
GCT UK
12 members
Having children after GCT.
Hello, friends! I hope everyone survived the holidays and is doing well. I just wanted to post a quick update and discuss some GCT related issues.
In the past, a popular question posted on GCT Connect has been regarding the possibility of having children after dealing with GCTs. I have a seven year old daughter and had planned to have more children right away before GCT entered my life. I have now been fighting this disease for over five years and I have never been able to get a firm answer from my doctors on whether pregnancy would be safe. The standard answer is that there just isn't much data out there on whether or not pregnancy hormones do, in fact, cause GCTs to recur or grow more rapidly. In my case, I have never been on Denosumab, I haven't had a tibia recurrence in almost two years and my lung tumors have been stable since they showed up three to four years ago.
Recently my husband and I were very pleasantly surprised to learn that I am pregnant. I am now about four months along and so far everything is going very well. This is a very personal thing to post on the front page of this site, however I feel it's important for a few reasons, the first being that GCT Connect is first and foremost a site for members to get support and to share their story. The second being that the unfortunate lack of information and research regarding our disease is a difficult thing to face when you are considering how to go about living your life after or with GCT.
While it is true that my experience with this pregnancy will not be an accurate prediction of how pregnancy will affect anyone else's GCTs, I thought it was worth talking about publicly because of the frequency with which the question is discussed on the site. I won't post anything else personal on the front page, however I will be updating on my personal page frequently. I wish you all the best of luck and I hope I am able to continue to report good news. Thank you all for your support and bravery in sharing your stories through the years.
Forum
tumor on finger 4 Replies
Started by angie. Last reply by Ian MacGregor 16 hours ago.
Denosumab and insurance 2 Replies
Started by Kara. Last reply by Rick Wong yesterday.
Denosumab, GCT and having children 5 Replies
Started by Meghan. Last reply by Sandra Jan 26.
Blog Posts
Giant Cell Tumor on Huffington Post Today!
Hi friends,
This is the first in a series I'm writing for the Huffington Post. I touch on my GCT experience and how my girlfriends helped keep me from losing my mind.
http://www.huffingtonpost.com/ellie-knaus/women-friendship_b_1202877.html
Posted by elizabeth on January 12, 2012 at 3:12pm — 4 Comments
I have plate & screws on left leg/knee to thigh and I want to have them removed...has anyone broke a leg and then had hardware removed
It will be two years in February, when I had broke my femur and was diagnose with a GCL that ate up 80 of my knee. I have soft cement in my knee, plate and tons of screws. I been checked every two months for the last two years with no re-occurrence and doing great. I exercise 4 times a week, walk twice a day (morning/night) for 30-minutes. The only problem is, I want the plate and screws out, it's hindering my strength to build up the muscle and my atrophy is pretty bad no matter how…
ContinuePosted by Francine on January 11, 2012 at 2:30pm — 2 Comments
Relay for life
I have started a team this year for the Relay for Life. The money raised here goes to the American Cancer Society which supports research for all cancers including Giant Cell Tumor Disease. Also, Just to let everyone know, Denosumab has now been approved for the treatment of breast cancer and non-metastatic prostate cancer. They still need more studies before approving it for us. Please check out my page if you would like, donations made can be as small as $1. It adds up. If everyone in the…
ContinuePosted by Rachael Cushman on December 19, 2011 at 7:36pm
Surgical Update: Tumor Free's the Way To Be
Well I had my appointment with the spinal surgeon the other day. He believes that they may have actually gotten all of the tumor out. There is a small part that they were not sure about, but could not safely remove. Either way it is a small enough area, I am certain that the medication should be able to kill it, if that's what it is. I did find out that they had to remove the heads of the right ribs. So they actually cut the ribs off of the sternum. I had no idea that they could safely…
ContinuePosted by Rachael Cushman on December 18, 2011 at 9:07pm — 1 Comment
Finally Home after Surgical Complications
So it's been a while since I've been online, but I just recently got home from the hospital. Surgery 4 was successful. I still have a little tumor left on my spine, but we knew that would be the case going in. There were a lot of complications from this surgery, I spent two months in the hospital instead of the planned 7-10 days and needed several blood transfusions.
So the doctors were able to get most of the tumor as I stated before which is great, however, they found…
ContinuePosted by Rachael Cushman on December 15, 2011 at 11:27am — 4 Comments
Latest Activity
Just found another tumor in my CT scan so I'm on my way back to Seattle soon for more surgery.
Status posted by Adriana Amaya
Still in Denosumab Clinical Trial! Results wonderful! Now if only the FDA would approve it for our condition! Completely got my life back!
Status posted by Christina Alamirie
© 2012 Created by Heather.
Powered by 
.
