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New here

31 Dec 2017 19:36

I was diagnosed with neurobpastoma as a baby and had a kidney removed. Then at 17, I was diagnosed with GIST. I’m 35 now and still battling with GIST. I have gone thru surgery, study meds, oral chemo, introvenious chemo, radiation, and naturopathic methods as well. I’ve just been told my chemo has stopped working. My new options are introvenious chemo, which in the past has shown not to work and there is no study that it will, Or immunotherapy, which I can get gout or immunodeficiency and the fix is a lot of steroids. I am not a fan of steroids because I used to be 200 lbs and I am very bodily conscience and do not want to put on all that weight again. I just feel so stuck. We were hoping to hold out for this new drug called “BLUE”. I don’t know anything about it but the doctor is really excited about it, but it is not available in our area yet.

I decided to do the adult make a wish and also fill out the five wishes. I am not saying I’m dying but my counselor wanted me to fill it out. I shouldn’t even be alive this long. I have 13 tumors, and when I was diagnosed, I was told I had paraglimoa which is related to my neuroblastoma. It that would have killed me right away. God gave me a second chance giving me this cancer. I was told when I was diagnosed that this cancer in 1997 was for African American men 40-50 years old. It is more spread out now but pediatric type is still rare and is harder to treat and is usually only death or chronic. If u get it older, it is more curable or chronic, rarely death.

I am an artist and use how I am feeling, to create my art.  I do not have a lot of friends because when they hear I have cancer, how may rumors I have and how long I’ve been battling it, they usually don’t stay too long. But I’m close with my mom. And my artwork...and tv ;). I guess that is about it for now

Sarah

Re: New here

2 Jan 2018 00:23 in response to Seapalmers

 

Hi Sarah,

It sounds as if you have had a tough time since the first day you were put on this earth. There are many people on this site who have lived well past their predicted time, but they’re obviously not ready to go yet and, I’m sure that you’re not either. I’m afraid that I know very little about GIST and even less about BLUE, but I hope that this becomes available in your area soon.

I am so glad to hear that your art is inspired by how you feel. It is also good to hear that you are close to your mom. We all need someone to confide in and, someone who can support us in our darker days. If it is of any consolation to you, it is not only cancer that people shy away from. They tend to shy away from many illnesses, so we have to become that little bit stronger in ourselves to overcome this.

I have had a lot of side-effects to my treatment for 2 bouts of breast cancer, but I wouldn’t change a thing if I had to go through it all again. In 1997 I stopped breathing whilst under anaesthetic for an operation. I was revived and brought back from the other side. Twenty years on I am still here and, I fear that I still have more damage to do before I will be let go. In those 20 years each day has been a bonus and I hope and pray that we will both be here for many more years to come.

Please keep in touch and let us know what you decide – gout is treatable and seems a small price to pay if immunotherapy can treat this. Remember that there is no guarantee that you will get these side-effects. You might just sail through your treatment.

We are always here for you whenever you feel like talking.

Kind regards,

Jolamine xx