Ewings Sarcoma

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Great News

by Alexis on Wed Oct 25, 2006 12:00 AM

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Hi all Won't blether too much today as you's are all busy people ...just want to share my great news with my friends in the states ...Ryan's tumours are shrinking ! ! ! ! ! he's only had the trial drug twice, but they are defiently shrinking ....he told me & showed me last night . . the 1 on his left waist line is only about 1/2 the visible size if he lays flat on his back ....doesn't get the drug full time till a week on Monday & CT 6 weeks after that ....but he can feel there smaller & I can see there smaller . . lets all keep praying for each other.....a drug will come to save our children lets hope it's this one! X

Great News

by Suzyq422 on Sun Oct 29, 2006 12:00 AM

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I am so happy for you! This is wonderful!! Does Ryan have a web page so I can give the link to Randi? We haven't decided on a treatment for Randi (actually it will be up to her). Found out hers isn't Ewings at all, but it is Chondrosarcoma (mesychymal) which means it is in her cartilage. Anyway, we took her to National Institute of Health in Bethesda, MD and they are looking at some different options for her. She is feeling great right now and has been going out a lot with her friends. I don't even worry anymore when she doesn't come home. I know she is safe with her friends and that God is watching over her. We will all keep marching!! Susie

Our Kids

by Alexis on Sun Oct 29, 2006 12:00 AM

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Hi Glad to hear Randi is doing good ...having fun with her friends exactly as young people should....hope they get her started on something quick ....don't want to give any kind of sarcoma a chance...Ryan is also doing good even is weight is stable at 9st...he's still about 2 stone under weight but a good bit heavier than he's been in a while . . . .he was at a Halloween party last night all dressed up ....seems to have had a ball of a time ....anyway I'll keep you's all up to date with my news hope you's will do the same....Ryan doesn't have a web site . . he's not into that sort of stuff ...takes up to much of his time, he's never felt the need to speak to similair young people even though the social workers have tried & tried . . he doesn't accept that he is sick so he acts as if he doesn't have anything in common with other sick young people, its a mind over matter thing ! ! ....strange I know but its what has got him where he is 3yrs 7 months later...so who am I to say any different Take care Karen

Great News!

by Jaxsmom on Sun Oct 29, 2006 12:00 AM

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Hi! So happy to read the great news! You must be so thrilled. It is so exciting!! Jackie finished her chemo last week. Counts are low today so she is tired, headache. You know the drill. Her last CT showed "something". They feel it is scar tissue, but instead of a CT scan next time we go back she will have a PET. So that's where things stand now. We are thrilled that the chemo is over. Now we will have to see what this test will bring, but with good news like you have given us, there is so much hope ahead. How is Ryan doing with this drug? Is he getting sick, etc? Glad you all had a great birthday. Sounds like it was so much fun. We haven't planned a party yet....waiting to see what the results are. Even if we did, she can't go to a pub ( have to be 21 in US), but we sure can have one at home. Well, glad for the "great news!" Truly awesome. Janet

Our Kids

by Alexis on Mon Oct 30, 2006 12:00 AM

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Hi Janet When's the Pet scan scheduled for . . is it soon . . have they explained to you's how it works . . in my/OUR opionion is totally unconclusive . . Ryan had 1 done on July 6th last year....they rang us within 2 days and said it was very bad news . . 3 new sites / tumours ....it was wrong & Ryan told them so right away ...1 tumour yes but not 3 ....he had had a bone aspirate on the Monday of the same week so there was 'activity' in the site ...they said it was disease ....he had a bone graph from his right hip (when he broke his neck . . don't think I mentioned that did I ? ) they said that was disease ....anyway the point to all of this is I hope your people know better what their talking about than the people who did Ryan's as they nearly drove us all over the edge. Bet you's are all glad the chemo's over ....its such a mile stone ....I was chatting to Angie and she wants me to find out the name of the drug Ryan's taking ...I keep mixing up the letters & the numbers ...will ask the nurse when at the hospital on Friday . . . only side effect so far is slite diorhea (spelling) but thats it no sickness no tierdness starts getting it full time from next Monday . . see what happens then. Chat soon thinking of you all! So happy for Jackie to be finished take care X

Our Kids

by Jaxsmom on Mon Oct 30, 2006 12:00 AM

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They really didn't explain the PET to us. Glad you did. Jackie isn't looking forward to having to fast for that. Well, you know what I mean = watching what she eats. She went for blood work today and has to go to clinic for blood and platlets (spelling) tomorrow. Her Dad will take her. She goes for the PET next week on the 8th. Between all this and stress at work, I am not having a very good day today. You know how it is...but we will keep marching. Jackie wants to be back from clinic tomorrow to help hand out candy to the trick or treaters and then she has a post Halloween party to go to on Friday. She really is looking forward to that. Well, we will keep our positive thinking going for all of us. Sounds like Ryans side effects aren't bad. Thank God for that! What these kids go through...dear God! Talk to you soon. Janet

Our Kids

by Alexis on Tue Oct 31, 2006 12:00 AM

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Janet Sadly we all know how it is ...but we just keep going ...I'm sure every time you feel under pressure you'll just think about everything that Jackie has gone through and think what your going through is nothing....thats what I do ...give myself a kick up the bum when I see Ryan & think I've a cheek to be down when he can always seem to be up! The PET scan shows active areas in the body rather than lumps. . its suppose to be able to detect diesease earlier than a CT ....I'm sure your people will have had more experience in interpreting the results than here in Scotalnd ....there only is 1 machine in the whole of the country ...it was the day of the G8 summit last year and we had to travel 450 mile round trip to go to Aberdeen to have it done, protestors on the train track made us 4hrs late. . it was a pure nightmare day. . cost me £125 for the 2 of us to get there & back ....then the completely wrong diagnosis nearly finished me ....I felt such dispair like I never have during all this....then 2 weeks later ....it was all a load of bull! Keep your chin up Love from Scotland X

Kids

by Jaxsmom on Tue Oct 31, 2006 12:00 AM

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I hope your right about them having more experience reading the PET. I know many kids have talked about having them to Jackie when we have been in clinic. How they have to watch what they eat, etc. and how starved they are. It's cute. She has a lot of little friends in clinic. I think the oldest person the doc has there is 25. Not sure. But the little ones just can't help make you smile. You know it is heartbreaking to see them too, but they just plug on. Jackie just made it to clinic, (8 am) she just called to let me know. She really wants to get out of there so she can see the little kids tonite in their costumes. I also know what you mean about these "down" times. Have to keep plugging. Feel better today, so I'm still plugging along. Sorry your PET was a nightmare. Sounds like it was horrific. You poor guys. At least now you know this treatment is working. Well,better get to work. The boss should be coming any minute. Keeping my chin up. Talk to you later. Janet

Kids

by Suzyq422 on Sun Nov 05, 2006 12:00 AM

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Hi all, Randi will begin her new treatment soon. It will be gemcitabine, docetaxel and avastin. Since these drugs have already been approved by the FDA, her local oncologist has offered to give her the meds. Not sure if insurance will pay for this, but this looks like the best option for now. Randi is doing great, visiting her friends at college and not being home much. She is starting to complain that her hip is hurting again though. Hopefully (and with lots of prayer) these meds will work. Just a reminder, she is fighting Chondrosarcoma and not Ewings, although they seem to be similar. Randi has never had a PET scan, it's always been CT scans. One day at a time! Susie

Kids

by Jaxsmom on Sun Nov 05, 2006 12:00 AM

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Randi sounds like she is doing well. Hopefully this treatment will help her. I wish you all the best and that it does! Jackie has never had a PET scan either. She has only had CT scans thus far. So this is new for us. She has applied to Penn State University to go back to college in January. Not the main campus, a local one near home. Or if necessary, she can still go back to Wilkes, also a local college, where she went before being diagnosed. They have said she can come back at anytime. She is doing great. Going out with friends this weekend and now chatting on the computer. If its not the computer, its the phone. I am sure you know how it goes. Well, keep us informed on how things go. I will let you know whats happening after the test. I never heard of Chondrosarcoma, but then a year ago I never heard of ewings sarcoma either. Boy, how life changes! One day at a time! The only way to go! Keep marching!!! Janet
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