Comments on: Writing/Designing a book on cancer

By: Brian Goodlataw-George

Brian Goodlataw-George — Mon, 17 Dec 2012 09:08:00 +0000

Sarah I’m glad to meet you, I’m 22 diagnosed at 21 as of February 23, 2012 with an unknown tumor in my right knee tibia, in fairbanks, alaska my leg was hurting since October and since then I was in and out of the hospital with pain in my leg, no immediate attention but to give me meds to cure pain in the leg, until February I went to Chief Andrew Isaac and they found an unknown tumor about 3 inches diameter in my right tibial bone, went to anchorage and seattle for treatment chemotherapy, surgery removal of the tibial bone and the knee with replacement of metal bone and neuroplasty knee, and more chemo 12 weeks so a years worth of treatment im still going thru it any questions feel free to email me:s129781@live.com

By: Isela

Isela — Wed, 07 Mar 2012 22:57:00 +0000

Hi, only want to share with all teens that my son Jose Guillermo is fine, healthy and with a normal life. He was dx with ewings sarcoma in 2008. We want to share with need support, we understand this great adventure . You can write us to iselamca@yahoo.com.mx we are living in Mexico, D.F.

By: Gkqmglfc

Gkqmglfc — Tue, 10 May 2011 23:53:17 +0000

skyscrapers,

By: Besa

Besa — Sat, 23 Apr 2011 19:55:13 +0000

Hi there, last year lost my dad to brain CA, I know there is a cure out there for all cancer types but wouldn’t be convenient to pharmaceutical companies (if you know what I mean). I am visiting a lot of cancer pts to gather info before diagnosed after and present. Any input will be greatly appreciated!
Thanks!

By: Jordon Collis

Jordon Collis — Sun, 12 Sep 2010 18:08:25 +0000

hi My best friend just got diagnosed with Ewing sarcoma two days ago.

She starts chemo tomorrow. I cried when i read these blogs because all of y’all are survivors and it makes so happy to know that their is life after this horrible struggle. If you have any tips on what will make things go smother or how chemo will affect her please let me know.

jordoncollis@swbell.net
truly inspired
Jordon Collis

By: melissa

melissa — Thu, 15 Apr 2010 01:41:22 +0000

hey …im very open with my cancer story. My story was actually very weird and doctors are still shocked that im still here. Its just hit me know with all the emotion and effects and need a way to talk about. I would love it if we could do a project or something on it!

By: Morgan Hayes

Morgan Hayes — Tue, 09 Mar 2010 07:56:42 +0000

I just copied and pasted this from what I wrote in Nikki’s site but this is in a nutshell, my daughter’s story…
Also, check out her progress at http://www.caringbridge.org
website name: morganhayes
March 9, 2010
I just found this site tonight when researching. Morgan will be 15 in June. My daughter was diagnosed on February 7th, 2010, at first, with Rhabdomyosarcoma (due to the characteristics). A biopsy was sent to Mayo Clinic in Rochester but they were unable to confirm that diagnosis so they requested another larger biopsy. Morgan was diagnosed on the 7th, started very aggressive chemo on the 10th of Feb for three continuous days in the hospital, was very sick from the chemo so they kept her an extra two days as well as surgically taking a larger biopsy on Feb 14th) We then went home where we spent a day and a half and had to come back to the hospital due to high fever and infection where we spent another four days. We were back home for two days and then back to the hospital for another in hospital stay of continuous five day chemo of which we had to stay six days. We were released on the sixth day in the late mid morning and readmitted back into the hospital later that afternoon due to Morgan being very sick with throwing up, acute stomach pains and extremely pale. Upon admittance, it was determined that her hemoglobin was only 8.5 and she needed two units of blood. We stayed until Wednesday night. Went home. Morgan fainted Friday morning at 5 am, fainted again Saturday morning and by Saturday night, we were back in the hospital. Upon admittance, Morgan’s blood pressure was 889 over 47. Her white blood count was 0.2 and her hemoglogin was 8.8. She received another two units of blood and is currently resting. We also just found out from Mayo clinic that what the Dr had diagnosed as Rhabdomyosarcoma turned out to be Primative Ewings Sarcoma. Mayo Clinic had a very hard time determining what type of Sarcoma it actually was because the Sarcoma is VERY cancerous! Morgan’s sarcoma started in her upper right thigh. The tumor, at time of diagnosis, was 17 centimeters and has since grown even larger! It has spread to her lungs (many, many tumors in her lungs), her righ lymph nodes in her neck, a baseball size tumor next to her heart and laying on top of her esophogus, her liver and both sides of her pelvis. Dr. Kobrinsky says that she has a 1 in 3 chance of survival. He can’t promise that she will not die. Currently we are still in the hospital, as we were admitted on Saturday and will most likely be here until at least Friday. Morgan was supposed to start her third round of chemo on Wednesday the 10th but her white blood count is only at 0.4. She has had a fever for the last three days and her tumor on her leg, which she calls Philip, now has oozing blisters. She has a sore throat, sore ear and mouth sores from the chemo that she had only a week and a half ago. Dr. K says that we need to treat this sarcoma as agressivly as her body will allow because it is such a fast growing cancer. The largest dangers lie in that she may lose her leg because of a blood clot and the tumor laying on her esophogus may cut off her oxygen.
I am writing this because Morgan has kind of cut herself off from her friends. She really doesn’t talk too much anymore and seems depressed. She was a cheeleader for the boys and girls basketball teams only just a few weeks ago.
You were wondering about how chemo would affect you and what to expect. I’m not sure what your dr has told you but you can expect to be sick: throw up, not feel like eating, mouth sores, get a fever, probably feel a little irritable,feel depressed…Dr. K says that for rhabdo and ewings sarcomas, the chemo drugs are the same. Treatment is the same. Morgan receives a total of five chemo drugs. Three the first round of chemo and two different ones the second round. It appears that all five make her violently ill.
I wish you the very best in your treatment. All victims of cancer are my hero’s! I will be praying for you as I pray for my own daughter and all victims of this vicious thing they call cancer. If you are interested in possibly communicating with Morgan, you may go to http://www.caringbridge.org after registering you may logon to her site by typing in morganhayes
Morgan has not yet had the opportunity to communicate with other kids that have cancer. It might benefit her and you as well to compare notes and be able to talk to someone else that has something similar. Good luck and God Bless You

By: Gidian

Gidian — Mon, 25 Jan 2010 03:20:03 +0000

By the way, here is my email address: gidian2@mchsi.com
` Gidian, 13

By: Gidian

Gidian — Mon, 25 Jan 2010 03:18:13 +0000

Hey! I am also a Ewings Sarcoma survivor. I have been in remission for 8 yrs now. A good tip is to always take probiotics ( a GOOD one, not the CHEAP kind! The best one that I know of is Ultimate FLora Care.)! My first chemo I didnt take the probiotics, and I got horrible mouth soars. I didnt eat for 6- 7 days because of them and it being too painful. My mom started me on the Ultimate Flora Care and I never got mouth soars again!

By: Danielle Richards

Danielle Richards — Mon, 02 Nov 2009 04:29:26 +0000

I am also a Ewings Sarcoma survivor. I was diagnosed when I was 16 and am now 21. I love your idea on creating a book about what you’ve learned. I definitely learned and have new ways of thinking ever since going through this experience. I’d love to be a part of this. You can email me anytime at danigurl0810@yahoo.com