One patient with glioblastoma still alive nine years later
by shannon2930 on Fri Feb 01, 2008 12:00 AM
by Nippatina on Thu Mar 06, 2008 12:00 AM
sorry to hear about your uncle.
What kind of sarcoma does he have?
7 years ago I had a dermo fibro sarcoma protruberans (dfsp) in my left thigh due to banging it 10 yrs earlier. mine was stage 3 11cm large.
I had surgery to remove it.
Well back in aug of 07 I was diganose with it again in my right lung. four tumors. Ranging from 1 cm to 5.6 cm.
It was confirmed a met and most believed to have been in my lung for at least 4 yrs. Mine is low grade. The tumors also grow very slow. was told by my the dr that it was a1 to 4 percent chance this cancer would spread. I am the second on in the tri state area to have this in my lung.
They cant do surgery on my lung due to where it is.
Im currently being treated with Gleevec. The side effects are different for every one and they drive me nuts. But so far its working. On my last scan in Dec my tumors shrank 11/2cm. I dont go back again until May for another scan.
My question to you is he seeing a sarcoma specilist. Not all drs can treat sarcomas. Im going to Sloan because they are the only ones in my area that can treat what I have.
by TRACEY038 on Sat Apr 19, 2008 12:00 AM
Metastatic cancer is when it has gone from one part of the body to another. I realize that this message is a few months old. Is he still OK? I hope so. I have had metastatic Sarcoma since May of 2003 and I am still fighting. The doctors didn't expect me to make it a year but I did. The most important thing is attitude and getting other opinions when needed. If you need, ask me any question>
by JuliesDaddy on Thu Apr 24, 2008 12:00 AM
On 4/19/2008 TRACEY038 wrote:Metastatic cancer is when it has gone from one part of the body to another. I realize that this message is a few months old. Is he still OK? I hope so. I have had metastatic Sarcoma since May of 2003 and I am still fighting. The doctors didn't expect me to make it a year but I did. The most important thing is attitude and getting other opinions when needed. If you need, ask me any question> Tracey
My father was diagnosed a little over two years ago with a sarcoma tumor in his right thigh. It was removed after radiation. It weighed in at 17 pounds! Now the cancer has mastasised to his lungs. He has been through multiple rounds of chemo using all types of chemo. Today, he went for his scan and found out all spots have grown. The dr says we can repeat on of the chemo types that don't have a lifetime dose maximum but didn't give us much hope! He also offered to stop treatment and set us up with a "support group". We ARE NOT ready to stop fighting! All of us, including my Daddy, are devastated! I can't seem to find even a drop of hope on the web! I am hoping against hope that you can give me any encouraging news since you are a fighter and survivor! Thanks for your time!
by TRACEY038 on Mon Apr 28, 2008 12:00 AM
by JuliesDaddy on Mon Apr 28, 2008 12:00 AM
First of all let me say, you are a hero! Just your story is a huge help! You hear so much bad news with this disease, it is refreshing to hear something positive! The fact that you are living (and loving) life is awesome! We are looking into md anderson right now! We have a friend who is a dr and he is refering my Dad. We have not had the therapy you spoke of offered to us. Is it offered at md anderson? I have just been pouring over the internet trying to find ANYTHING that sounds hopeful! I found a new drug I haden't heard of before called "trabectedin". Do you know anything about it? So, anyway, thank you so much for your reply! I would love to stay in touch with you! I wish you the best of luck and will add you to my prayer list as we all pray for a cure for this MONSTER! Best wishes & thanks again!
Are you going to M D Anderson Orlando or Houston? If it is Houston I saw Dr Burgess there and he keeps in touch with my doctor in Orlando with ideas of what to do. The Photo dynamic therapy I did is at Shands Hospital in Gainesville, Fl. It is where they give you a drug and two days later they go into your lungs (through your mouth) and hit the cancer with a light, which kills the cancer and then they take the cancer out. I was put to sleep 3 times a week for 3 1/2 weeks for the procedure but they got 80% of the cancer they could reach with the treatment. And being put to sleep that much wasn't a big deal. http://www.mesotheliomacancer.com/?pageid=455 This is a link to inforation about PDT. Maybe M D Anderson could help you find someone who does it if they have no treatment ideas. If you need me to find who does it I can contact my doctor who did mine but I think there are only 4 or so places in the U S who do it. There are also cancer organizations who can help you with airfare, hotels, etc if you need. Also one last thing has he registered with the American Cancer Society? They offer many services and infirmation that can be very helpful. Again, if I can do anything to help please let me know. GOOD LUCK
Thank you so much for replying again! You have no idea the hope you have given me! I am extremely excited about the photodynamic therapy! I would love for you to find out where we could go for the treatment if you truly don't mind! And how did you say my Mom & Dad could get help on airfare, hotel, etc.? Because that would be wonderful! Are you taking any treatments now or did you just have the photdynamic therapy? How long has you cancer been stable? And are your spots in your lungs not growing at all? I know God put you in my path and I am SO thankful! You have single handedly been the only person who has helped me sleep at night since we got this bad news! Thank you!
by Jenny_Wayne on Fri Sep 28, 2012 09:51 PM
Hi Tracey and All,
My husband Wayne (a 44 year old father of two young girls, age 6 & 10) was recently diagnosed with Metastatic Sarcoma in both lung. One of the tumor is viewed as very difficult to operate on. We are looking for information on photodynamic therapy. If any of you have any information on photodyamic therapy for sarcoma please share them.
Our family live in Canada, but we welcome all recommendation.
by Cfsweets on Mon Dec 17, 2012 01:05 AM
The day before my 30th birthday I found out that I had sarcoma. We don't know the subtype yet, but at time of diagnosis it had already metastasized. The primary site is the left lung, the lower lobe removed because of a 13cm mass. I have 2 small nodules, one in each lung. I am looking for any hope that I can beat this. I have 2 children, ages 4 and 3 months. I just want to be around to see them grow and help them along the way. I will do anything. I am seeing a specialist at Sloan, but he is not hopeful because metatstatic sarcoma disease has a poor prognosis. But I am healthy- I ran until I was 4 months pregnant and then I walked until I delivered. I started running 1 week after I delivered by second baby and was up to 6 miles 6 weeks later when I presented with pneumonia/ pleural effusion. After thoractomy and lobectomy I can't make it up the stairs without getting winded. I just want to live. Any positive stories?
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