I began playing suduko on June 3rd when I was admitted. I am now a suduko junky. lol. I hope it works for you . Hugs and smiles, karlyn ... From: youngsteph12...
Kathleen, I am sorry but impressed that I have met someone with more desmoids than me. I was recently diagnosed with tumor #11 though I think the number is...
Hi Steph, I checked out your blog and commend you for your honesty. It's not easy to do that. Anyway, I think you wrote that you're having the surgery at the...
Steph --- the pain is probably not as bad as you might fear, but you get sharp pains when you move the "wrong way" --- watch out for sneezing and coughing ......
Hi Adeli, My now 17 yr old son was diagnosed with turcot syndrome when he was 12 yrs old. He also had a stroke at 12, we went to our local hospital and they...
Steve, Very interesting article. Kathleen **************Get the scoop on last night's hottest shows and the live music scene in your area - Check out...
Shaughn, Yes, I have so many now that I am scared of every painful place that hurts. I am lucky so far though I have none in the abdomen cavity. I have 2 in...
Kathleen, I have taken adriamyacin in the form of doxorubicin liposomal, in fact, little known truth but I was the first patient to take doxil for the...
I get the camera pill every year because of the continuous polyps that grow in my small intestine. I get a double balloon endoscopy every year also to make...
Kathleen, If you have FAP how have you managed to not have any surgeries? Don't you have polyps in the colon? Because of Him, Darlene The Clay Factory ...
Darlene, I know your question was not directed to me but I only had one major surgery at the age of 6 or 7 and that was to remove two large cysts from my face....
Darlene, I have had a lot of surgeries including all my colon just no surgeries in relation to desmoid tumors. 13 surgeries total to date. Thousands of...
Shaughn, I will ask my doctors about Navelbine and see if they will change Vineb too the other. Thank you for the info, because Meth/Vineb is not working to...
Kathleen, I am currently on Navelbine and have been since May. The typical regimen is three weeks on and one week off but I elected to do four weeks on and...
Cheryl, Someone asked the question if there are any forms or FAP that also have brain tumors> I told them about Turcot Syndrome, Sue ... From: Cheryl...
My daughter has FAP and a brain tumor. My husband also has FAP, desmoids and had a tumor in the nasopharnynx. feel free to email me if you have any questions....
I had my thyroid reultrasounded and the Endo doc says it's too small to biopsy so I'll have it rechecked in 6 months. I had my flex sig this morning & was told...
The doctor has not said what his thoughts are. He requested a pet scan and was turned down by the insurance company. I don't know why he wants a pet scan....
Adeli, You can also email me anytime. Xander had a brain tumor related to GS and has Turcot syndrome, as the hole family has the high risk for brain tumors...
